nl apr june 2018 - hemophilia.in · the iconic qutub minar lit up in red to commemorate world...

VOLUME: 1, ISSUE: 01 | APR. - JUN. 2018

Free EditionN o t t o b e S o l dLIGHTING IT UP IN RED

ChronicleA quarterly bulletin on Hemophilia

The iconic Qutub Minar Lit up in red tocommemorate World Hemophilia Day

Hemophilia without Disability, Children Free of Pain

QUTUB MINAR

BL DS !

th16 APRIL2018

Hemophilia

th 16 April New Delhi: Hemophilia Federation (India) and Shire India, a leading global biotechnology company focused on serving people with rare diseases, came

together in solidarity to launch a unique initiative to turn the spotlight on Hemophilia and its management. Delhi's iconic monument, Qutub Minar was lit up with red lights as part of the World Hemophilia Day campaign to increase awareness and understanding of this genetic disease in the society. Hemophilia afflicts 1 in 10,000 people and with the right treatment and holistic care, these patients can potentially lead a near-normal life.

A panel discussion involving Mr. Vikash Goyal (President, HFI), Mr. Mukesh Garodia (Vice President – Development, HFI), Ms. Vinita Srivastava (National

Consultant & Coordinator, Blood Cell – NHM, MoHFW), Dr. Tulika Seth (Professor Hematology, All India Institute of Medical Sciences (AIIMS)), Dr. Brig. Ajay Sharma (Prof. & Head, Dept. of Hematology & Center for Stem Cell transplantation & research, Ganga Ram Hospital) and Mr. Vineet Singhal (Country Head, Shire India) was organized in the backdrop of Qutub Minar that defined the vision of managing

Hemophilia, providing much-needed hope for the patients to lead a near-normal life.

The panel focused on the topic of improving and sustaining care for people with Hemophilia, improving

lives by training experts in the field to facilitate early diagnosis; advocating for sufficient supply of quality t reatment products; and educat ing and empowering people with right resources and information to help them live better.

HFI & it’s Chapters CelebrateWorld Hemophilia Day 2018Across the Country.

Hem

ophilia without Disability, Children Free of Pain

Hem

ophilia without Disability, Children Free of Pain

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Speaking on the occasion, Shri Vikas Goyal said, "So far the Hemophilia Federation (India) has identified 20,488 children and adults suffering from Hemophilia. Considering lack of awareness in the people and the population of India, this number can be approximately 1,30,000 (0.13 million). Therefore, there is a greater need for trained doctors and screening facilities to ensure identification and diagnosis of people suffering from haemophilia. We are proud to be part of this initiative because we believe that information-rich society and patients can make a difference in the management of conditions of haemophilia disease. It is a historic initiative for us today because all the stakeholders are jointly launching a national commitment to resolve haemophilia by gathering under the famous Qutub Minar”.

Dr. Tulika Seth (Professor Hematology, All India Institute of Medical Sciences (AIIMS)) said, “With access to adequate factor replacement, appropriate monitoring and good physiotherapy, all children with Hemophilia can lead productive and pain free lives. It is important to inform the public about this disorder, so that if children develop joint swellings after injury or increased bleeding, the families can come forward for early diagnosis. We need a network of trained health care facilities and providers so that the families do not need to travel far off centers for diagnosis or treatment.”

The event was widely covered in print and electronic media.

INITIATIVE ON HEMOPHILIA CARE IV | IHC IVA Sensitization Programme and the Way Forward

HEMOPHILIA CHRONICLE VOLUME: 1, ISSUE: 01 | APR. - JUN. 2018

New Delhi, 17 April, 2018: This year, as in previous ones, 17th April is the occasion to celebrate World Hemophilia Day. Hemophilia Federation (India) under the aegis of Ministry of Health & Family Welfare renewed its support to the patient community by organizing the fourth in the series of the programme "Initiative on Hemophilia Care - IV" at Jacaranda Hall, India Habitat Center, New Delhi with support of and Shire Novo Nordisk India Pvt. Ltd.

200 participants took part to promote the initiative "IHC-IV" which included Hemophil ia act ivists, Healthcare Professionals and Policy makers from across the country. Dr. A Surya Prakash (Chairman Prasar Bharti) was the Chief Guest and other Hon'ble dignitaries accompanying him on the dais were Dr. Sanjeev Kumar (Deputy DCGI), Dr. Sanjay Kant Prasad (Deputy Chief Commissioner, Disabilities, MoSJ&E) and Mrs. Vinita Srivastava (National Coordinator Blood Cell, NHM, MOH&FW).

The programme began with floral tribute to Late Sh. Ashok Bahadur Verma (Founder HFI). Mr. Vikash C. Goyal (President, HFI) delivered the welcome message and he thanked the dignitaries for their continued support.

Mr. Mukesh Garodia (VPD, HFI) lauded the continuous support of Ministry of Health & Family Welfare, Drug Controller General of India (DCGI), Dr. A Surya Prakash and Ministry of Social Justice & Empowerment. Highlighting the efforts of HFI, he informed that HFI has identified and recorded 20,488 P/CwHs in National Hemophilia Registry (NHR) and NHR is being managed by HFI. Citing the NHR data and country's population, he stated that almost 80 to 90 thousand Hemophiliacs are yet to be identified and diagnosed. He said HFI's advocacy has played a major role in expanding the treatment support from 3 states in 2007 to 21 states at present. He also acknowledged the support of various health authorities like ESI working under the central

th17 April 2018

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government health schemes to develop Hemophilia care in their respective states.

He appreciated the State of Odisha for providing Home Therapy which is the primary need of Hemophiliacs and expected the same from other states. He lauded the rise in graph of Hemophilia Care due to the effort of NHM, MoH&FW and the committed support by Mrs. Vinita Srivastava (National Co-ordinator, Blood Cell, NHM, MoH&FW).

The second to none commitment of Dr. A. Suryaprakash Ji (Chairman, Prasar Bharti Board) was appreciated and Mr. Mukesh Garodia thanked him for providing the platform on Door-Darshan's Good Evening India show to discuss Hemophilia and HFI's initiatives.

He thanked DCGI for his support and requested for a standard protocol to procure Anti Hemophilia Factors (AHF) as per international safety and efficacy guidelines. He was also appreciative of the role of Ministry of Social Justice & Empowerment and the contribution of Shri Kamlesh Kumar Pandey Ji (Chief Disability Commissioner, MoSJ&E) in bringing Hemophilia under Disability Act 2016.

Placing the demands of Hemophilia community on the forum, he summarized the requests which are uniform funding across states, a National Policy on Hemophilia, Hemophilia Comprehensive Care Centres (HCCCs) in all 36 States & UTs, setting up Hemophilia Treatment Centres (HTCs) with coagulation laboratories in every district and Paediatric Prophylaxis.

Vinita Srivastava (National Coordinator Blood Cell, NHM, MOH&FW): “India has the highest no. of Hemophilia Patients in the World. We are facing many challenges in terms of diagnostic facilities, state demography, administrative hurdles, management of acute bleeds, prevention of disabilities, training of physicians, tendering procedures, implementation of Hemophilia registry, conducting surgeries and management of inhibitors. But most of the basic challenges can be addressed with active involvement of States. The states have no dearth of funds and NHM funding is also available to supplement the support further. The states have to plan in terms of diagnostic facilities and training of manpower resources. However, Health Ministry cannot go for a National Tender as health is a state issue but guidelines for procurement can always be made and shared with the States. The guidelines will soon be circulated to all the stake holders and suggestions from them can always be included in it.”

She assured that the ministry is working with the states to provide basic diagnostic facilities and trying to setup integrated comprehensive centres which will address the problems of Hemophilia and other rare bleeding disorders too. She praised the registry setup by State of Karnataka and hoped that others state can replicate it. She said that an expert committee is already in place and soon within 3-4 months it will come out with a Hemophilia Policy.

Dr. A. Suryaprakash (Chairman, Prasar Bharati Board): “I hope that deliberations will further improve the facilities for Hemophilia patients. Prasar Bharati has a role in sensitization of the population to the problems faced by Hemophilia patients. The parliament has given the mandate to Prasar Bharti to pay specific attention towards education, spreading literacy, agriculture, rural development, environment, health & family welfare and science & technology. These are the areas we focus in All India Radio (AIR) and Door Darshan (DD). The mandate allows us to take special measures to protect the interest of Children, Visually impaired, Aged, Handicaps and other vulnerable sections of the society.”

He assured his complete support for Hemophilia through AIR & DD in sensitizing the healthcare professionals, patients and the public. He said that he is glad to see the progress made in many of the matters related to Hemophilia and stated that a healthy India will be a prosperous India.

Burden of Hemophilia on Government of India

Dr. Shashi Apte (Vice President Medical, HFI) explained through his descriptive presentation about the impact of Hemophilia and economic burden of the disease on the country. He reinforced the key requests placed by Mr. Mukesh Garodia and went on to add that, “Health care system in the country needs to be Homogeneous so that the aim of 'One Country, One Treatment' can be achieved. Our primary goal is proper diagnosis and prevent bleeding. Ideal care can be delivered if there is one HTC in each district with diagnostic facilities and one HCCC in every state. This is a huge burden and that's why HTCs must be developed in existing healthcare system for which government support is extremely crucial. Adequate factor for therapy is important and there is urgent need of training in medical colleges. 0.8 IUS – 1.0 IUS/Capita of AHF is adequate to treat the Hemophilia Population in the country. Once we have that then Prophylaxis can be done. We should not allow bleeds to occur. We have to move to treating Hemophilia from treating the bleed. To reach 1.0 IU/Capita, 1.3 Billion Units of IUS will be required. At an average price of Rs.15/IU, expense incurred will be 19.5 Billion INR to reach 1IU/Capita and then we can give 77,000 IUS/PwH/Year. Even if we double the no. of PwHs diagnosed then IUS/PwH/Year will be around 38,000 IUS which is quite sufficient to maintain the quality of life of PwH.”


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Mr. Sanjeev Kumar (Deputy, DCGI): “I congratulate HFI for organizing this event. It is our moral duty to support the Hemophilia sufferers of the country. We are issuing NOC's within 2-3 days for imported Anti Hemophilia Factors (AHF) even to less than 60% of residual life. We understand that our patients

require these medicines in emergency situations that is why exemption is given to HFI for obtaining import license and registration certificate to import these medicines otherwise the actual process of getting NOC's is very lengthy. DCGI can also depute any officer to check the quality parameters as and when required. Also it is the responsibility of HFI to ensure that these medicines are distributed within the expiry period and a proper utilization record is maintained for verification. HFI will have to comply with all the regulatory guidelines and once the medicines are distributed then HFI shall monitor patient safety and maintain the reports through whom the medicines were administered.”

He also supported the need of a standard protocol for AHF procurement to achieve the aim of “One Country, One Treatment” and highlighted the need to strengthen indigenous manufacturing to reduce dependency on foreign products. He informed that the DCGI has opened a PRO to promote hand-holding for problems or difficulties faced by the stake holders or patients.

Dr. Sanjay Kant Prasad (Deputy Chief Commissio-ner, Disabilities, Ministry of Social Justice & Empower-m e n t ) : “ H e m o p h i l i a i s included in RPWD Act 2016 and soon the guidelines will be finalized. We are open to s u g g e s t i o n s f o r t h e implementation of the ACT and whatever facilities are given to a Person with

Disability, we will try our best to extend all those to Person with Hemophilia. Your recommendations and efforts are needed for review of the act and to apprise the state authorities for its implementation. In addition to medical professionals, other professionals such as psychologist, social workers and administrators are also required. The Rehabilitation Council of India in RPWD Act mandates the professional required for disability and we are jointly working to fulfil this requirement. You can also give recommendations for a specific curriculum for the professionals in this area. To the 'slogan One Country, One Treatment', I add 'One Thought, One Strategy'. I assure you to deliver the best.”

During the panel discussion he informed that reservation in RPWD Act for disability is increased from 3 to 4 percent. However, Hemophilia, is not yet included in the reservation process because it is considered as a cause for disability and not as affect. He assured that a 11-member advisory committee has been formed with inclusion of an expert professional on bleeding disorders. The committee will meet frequently and explore the needs. Then the needs will be addressed through a proper management process.

orld Congress of the World Federation of

W th thHemophilia was held between 20 to 24 May 2018. The venue was Scottish Exhibition &

Conference Centre in Glasgow, UK. World Congress of the World Federation of Hemophilia (WFH 2018) is the biennially held platform where specialists from Medical field connect to consider conclusions and assumptions to advance education on Hemophilia and Allied Disorders.

Mr. Vikash C. Goyal (President, HFI) led a team of HFI members to attend the congress to further strengthen its ties with the parent body and associate with other Hemophilia Societies. He also made two presentations on "Advocating for Better Outcomes – Using Data to Build the Evidence Base" and “Forward-thinking NMO: The India Experience”.


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Youth Groupof Hemophilia Federation (India)

th 6 Annual Youth Meeting

th throm 13 to 15 April 2018, the Youth Group of Hemophilia Federation (India) conducted

F thits 6 Annual Youth meet at the Fabhotels -Seven Olives-Bengaluru. Over 100 youth leaders from various HFI chapters across the country participated in the meeting. Mr.

Vikash C. Goyal (President) and Mr. Mukesh Garodia (VP Development, HFI) were also present on the occasion and they motivated the youths in their welcome address.Mr. Harshal Kale (Youth Group Chairman, HFI) gave the context for organizing the meeting and its significance. Mrs. Hema Malini (Director of Champions Group) was the Chief Guest. She instilled confidence in the participants and assured possibilities of job opportunities for Hemophiliacs in Champions Group.

Election for new Youth Committee was conducted for the positions of Regional Youth Representative (RYR) and Assistant Regional Representative (ARYR) for each region under the supervision of Mr. Mukesh Garodia (VP, Development, HFI). The newly elected Youth Committee went through an intensive 6-hour induction workshop by Mr. Dev Tayde who is a community social worker. The workshop was conducted to create cohesiveness in the newly created team and defining what does the new youth committee want to achieve through their tenure of next 2 years.

Various sessions were conducted. Mr. Arindam Das, a motivational speaker, conducted a session on strengths and weaknesses. Mrs. Anu Biswas is a cofounder of Prakat, a tech-firm encouraging People with Disabilities for equal opportunities. Her session had interactive personal stories. She emphasized collaboration among PwHs for businesses as they know each other's Pain. She highlighted and discussed areas such as content writing, online tutoring, freelancing and software development where PwHs can earn.Dr. Upali Dasgupta, a Veteran psychosocial counsellor conducted a session on Psychosocial Support. She emphasized on various topics like leadership, knowing strengths, weaknesses, confidence development, interpersonal communication skills, relationship, conflict management and time management. The session was very informative.Day 2 ended with Chapter presentations and a session on Hemophilia and sexuality. Over 50 chapters' youth representatives presented the youth activities conducted in their chapters with their role. The session helped them to practice their public speaking skills and to identify the upcoming leaders.Day 3Mrs. Usha Parthasarathy, Save One Life Org – India Project co-coordinator explained about Save One Life education scholarships and grant for Micro enterprise for Person with Hemophilia, for their startups. She explained about the eligibility of grants and how to submit project to SOL. It was very important session as the informed youths will return to their chapters and spread the word to help maximum deserving youth.Mr. Subramani heads Pratian Technologies and some start up collaborators. His session was on employment and he encouraged participants to find their life's massive transformative purpose and work towards that. He also explained how one can leverage the network and make most of it.Dr. Siju K Paul (Physiotherapist, Bangalore chapter) headed a session on Physiotherapy. He stressed on importance of Physiotherapy in strengthening muscles, reducing joint bleeds and joint pain. He recommended practice for at least an hour of exercise every day to maintain joint and muscle health.Mr. Satyanarayanan shared his experience of participating in round table on Gene Therapy conference in Montreal, Canada. He explained how Hemophilia can possible be cured with gene therapy. He also informed that the trials are in initial stages and showing some positive results. All the facilitators were presented with the plant saplings as token of love.


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thOn 6 May 2018, the Chapter and Indian Red Cross Society jointly organized a programme to celebrate World Hemophilia Day. Nearly 75 P/CwHs participated. Mr. Jagdish Sharma (Founder, HSJC) welcomed the guests and began the programme. While giving information on Hemophilia, he said that some problems of patients suffering from this disease have been solved, but there is still lot to do.

Mr. Dinesh Gupta (Honorary Secretary of the Red Cross Society) said that his whole effort would be to help people suffering from haemophilia everywhere. The patients who come from far-flung areas to hospital for treatment will be provided free stay in the Red Cross Bhawan near GMC Jammu.

Mr. Dheeraj Thakur (Regional Head, Griffols) gave information about primary treatment to patients and emphasized on helping one another.

It was also informed that because of chapter's lobbying, the Health Department has issued an order to start four more Hemophilia Treatment Centres in far-flung areas of Jammu division i.e. Doda, Poonch, Rajouri and Gandhi Nagar.

On this occasion, a quiz contest on Hemophilia was organized for children. Questions related to Hemophilia were asked and children who answered correctly were rewarded with Rs.100/- each.

Mr. Rohit Jindal (President, HSJC) thanked everyone and hoped in future too, all will come forward similarly to help the patients.

World Hemophilia Day Celebration held in Karnal - Haryana government committed to provide healthcare to the people

ndOn 22 April 2018, the Chapter celebrated World Hemophilia Day at Auditorium of Pareek PG Girls College, Jaipur. Over 300 PwHs and their parents took part in the Programme. Guest doctors Dr. Ramavtar Sharma (Additional Medical Superintendent, SMS Hospital Jaipur) and Dr. Amit Awasthi educated the patients on various aspects of Hemophilia.

Gharonda's MLA Harvindra Kalyan was the Chief Guest and Hafed's Chairman was Special Guest of Honor. Civil Surgeon Dr. Ashwani Kumar, expert Physiotherapist, Mr. Daljit, Dental expert Dr. Manu Sharma and Mr. Vishnu Goyal (Secretary, HSYC) were present as Guests of honor.

Members of other Hemophilia societies of Haryana like Palwal, Bhiwani, Kurukshetra, Ambala, Bhuna, Sirsa, Hisar, Yamunanagar and Rohtak were also present in the program including 76 PwHs.

The MLA said that the person must have sensitivity at all levels. The responsibility of the government is to provide facilities to the public, which the government is performing well. This subject is linked to humanity and we should consider it deeply. The Chief Minister is making constant efforts to ensure that no common man is deprived of any kind of health care services. The state government is providing free and high quality medical services to all in government hospitals. He said that the Prime Minister of the country Mr. Narendra Modi and the Chief Minister of the state Mr. Manohar Lal are working seriously in the direction that health services are available to the people as much as possible. Kalpana Chawla Medical College & Hospital built in Karnal is an example of this. Apart from this, the construction work of Kutel Medical University, is soon to be started.

In the program, Hon'ble MLA distributed Rs.5000/- each on behalf of the society to Mr. Gulshan Gulati for his sister's and Mr. Nanak Chand for his daughter's Carrier Detection Test. He assured to discuss facility of Career Detection Test in Government Hospital with the government.

th On 29 April 2018, Sunday, a program was organized by the Hemophilia Welfare Society Karnal at Aroma Hotel, Karnal to commemorate the World Hemophilia Day in which

Regional ActivitiesNorthern Region

Jammu Chapter Jaipur Chapter


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Hemophi l ia Awareness Programme & Physiotherapy camp at Bhuna, Fatehabad, Haryana

thOn 10 June 2018, the Hemophilia Society Bhuna organized a Hemophilia Awareness Programme cum Physiotherapy Camp at Duke Hotel Fatehabad, Haryana. Nearly 100 PwHs, their families and the representatives of all Hemophilia Societies of Haryana took part in the programme. Hon'ble Shri Subash Brala Ji (MLA and President BJP, Haryana) was the Chief Guest in the programme and he assured factor availability in the district Hospital. Shri Vishnu Goyal (Former RCC North & Secretary, Yamunanagar Chapter) was also present. Mr. Joginder Sethi (President, Bhuna Hemophilia Society) welcomed the guests.

Dr. Manish Bansal (CMO, Civil Hospital), Dr. Himanshi Batra (Physiotherapist) and Dr. Ila Narang (Paediatrician) educated the PwHs on various aspects of Hemophilia and the services being provided at Civil Hospital. Patients were shown video documentaries on Hemophilia and they were educated on important physical exercise.

thOn 17 April 2018, the Chapter celebrated World Hemophilia Day at Belonia, South Tripura. Nearly 150 participants including the local MLA, SDMO, DM, patients and their families were present. They also organized “Hemophilia Walk” and rallied with Hemophilia Banners and Posters.

Eastern Region

Agartala Chapter

The chapter members also met with Hon'ble Health Minister of Tripura Mr. Sudip Roy Barman to apprise him about the challenges faced by Hemophilia patients and to improve treatment facilities.

The chapter also conducted awareness programmes at Udaipur District Hospital, Santir Bazaar District Hospital and Belonia Sub-Division Hospital. Free AHF is available in all these 3 hospitals.

Odisha Inaugurates “Home Therapy Treatment" for the Persons with Hemophilia

participants were present to mark the occasion which included Chapter members, doctors and bureaucrats.

Dignitaries present were Shri Jayanta Narayan Sarangi (Additional Secretary, H&FW, Govt. of Odisha) and Dr. Debasish Mishra (Joint Director, Blood Safety, H&FW, Govt. of Odisa), Mr. Vikash C. Goyal (President, HFI), Prof. U.C Patra (HOD, Dept. of Clinical Hematology, SCBMCH), Dr. N. C. Pattnaik (Associate Professor, Dept. of Clinical Hematology, SCBMCH) and Dr. Rajeeb Kumar Nayak (Assistant Professor, Dept. of Clinical Hematology, SCBMCH)

Odisha became the first State in India to Officially start Home Therapy Treatment for Persons with Hemophilia with a “Unique Identification Code” & “Record Book”.

th On 11 April 2018, at the Surgery Lecture Hall, Department of Clinical Hematology, SCB Medical College Cuttack and Chapters of Odisha namely Bhadrak, Brahampur, Rourkela and Bhubaneswar organized an event to launch Home Therapy Treatment in the state. Over 200


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thOn 30 May 2018, the Chapter organized a CME at Govt. Medical College & Hospital Balasore. Nearly 100 participants attended including many physicians and resident doctors. Hon'ble MLA Jiban Pradip Dash inaugurated the workshop by lighting the lamp. Various scientific sessions were held covering topics such as Diagnosis, Factor Therapy, Bleeding Management, Prophylaxis, Home Therapy, Inhibitor Diagnosis & Treatment, Physiotherapy and Latest Generation Factors. Dr. Meenakshi Roy (CDMO), Dr. Bibekananda Das (DMO), Dr. Pratap Kumar Ratha (Dean), Dr. Sudhir Ghosh (Medical Superintedent), Dr. Hemlata Das, Dr. G.C Jena and Dr. Manoj Kumar Hansdah made the workshop a huge success.

WFH- Global National Member Organization Training

& WFH-World Congress & General Assembly

Mr. Shubhasish Behera – Regional Council Chairman (East) and Milan Sinha – Secretary (Guwahati Chapter) attended the WFH – Global NMO

th thTraining in Golden Jubilee Conference Hotel Glasgow from 17 – 19 May 2018. Mr. Milan Sinha represented India for WFH – Humanitarian Aid. Both attended the WFH – World Congress & General Assembly in SEC Centre

th th Glasgow from 20 – 25 May 2018.

Continuous Medical Education (CME)

th On 29 May 2018, the Chapter organized World Hemophilia Day at Balasore Medical College & Hospital in which 60 PwHs and their parents took part. Dr. G.C Jena talked on awareness and role of chapter.

st ndOn 21 and 22 April 2018, to mark the occasion of World Hemophilia Day, the chapter's Women Group organized a Psycho-Social Counseling program for the Hemophilia afflicted families. Dr. Upali Dasgupta (Psychologist) was the programme lead and she counseled four PwH families on one to one basis. She also held a closed door session with newly enrolled mothers and the members of Women Group. The programme was very successful and the participants seemed relieved and comforted by the counseling.

thOn 30 June, the Chapter organized an educational programme on “Importance of Physiotherapy” at its care centre under NNHF Project (Mr. Ajoy Roy is the Project Leader). Children with Hemophilia below the age of 12 years attended the workshop. Participating Hemophilia family members also learned importance of regular exercises and physiotherapy under the supervision of Mr. Subhajit Das (Trained Hemophilia Physiotherapist). He also did individual inspection of the patients and advised them to regularly continue the exercises.

Importance of Physiotherapy

Bhadrak Chapter Durgapur Chapter


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thOn 17 April 2018, the Chapter celebrated World Hemophilia Day at Guwahati Medical College & Hospital. From the faculty of GMCH Dr. Smita Das, Dr. Damodar Das, Dr. Sewali Deka Talukdar, Dr. KamalChakraborty (Casualty Officer), Dr. Sukalyan Deyand and Dr. Raman Talukdar (Superitendent) were present on the occasion. Hemophiila patients and their families from all over Assam also took part and celebrated the day by releasing balloons and cutting cake. Additionally, The Hans Foundation scholarship cheques were also distributed to the beneficiaries.

th thFrom 28 – 29 June 2018, the Chapter along with its Women and Youth Group Celebrated World Hemophilia Day at Seminar-cum-Library Hall of Department of Transfusion Medicine, Regional Institute of Medical Sciences, RIMS.

The inauguration function was graced by Prof. L. Ranbir Singh, Medical Superintendent, JNIMS Hospital as Chief Guest. Prof. L. Jaichand Singh, HOD Radiotherapy and in-charge Medical Superintendent, RIMS Hospital, Dr. L. Tomcha Khuman, State Program Officer (State Blood Cell), National Health Mission, Manipur were the Guests of Honor.

Prof. A. Meina Singh (Professor of Transfusion Medicine, RIMS and Chapter President) briefly spoke on 'World Hemophilia Day and this year's theme “Sharing knowledge makes us stronger”. Most significantly Dr. L. Tomcha

Khuman gave a good news that National Health Mission has sanctioned Rs.85 Lakhs for purchase of Anti Hemophilic Factor (AHF) for P/CwHs of Manipur. He then informed on the programmes by Blood cell of NHM assuring financial help and services for Hemophilia awareness and identification in the state. He also distributed 30 copies of booklet titled “NHM Support for Strengthening of Blood related Services in Manipur” published by 'State Blood Cell, NHM, Manipur'.

Prof. L. Ranbir Singh, narrated his long association with Children with Hemophilia while he had been serving in RIMS as HOD Paediatrics, and suggested to involve other health care workers for the cause of Hemophilia Care in the state. As a gesture of generosity, he donated a sum of Rs.5000/- to the Chapter. Dr. L. Jaichand Singh stressed the need for people's support for Hemophilia patients and their families. He said that Hemophilia, like cancer, is a painful and debilitating disease which impacts not only patients but their families also.

As part of the celebration, an awareness session on different aspects of Hemophilia care was also conducted with 4 (four) resource persons. Dr. Irom Anil Singh (Assistant Professor and Clinical Haematologist of JNIMS Hospital) spoke on “Hemophilia patients in Manipur”, Dr. W. Tulsidas (Assistant Professor, Dental College, RIMS) spoke on the “Dental Care in persons with Hemophilia”, Dr. P. Lolito Singh (Head of Physiotherapy, RIMS) spoke on the 'Physiotherapy support in Hemophilia management' and Prof. A. Meina Singh spoke on 'Other aspects of Hemophilia', especially about carrier detection, genetic counselling and testing, and different programs and support by the Hemophilia Federation (India), World Federation of Hemophilia etc. and other areas on Hemophilia care. The talks were very enlightening and highly useful for the Persons with Hemophilia and their family members.

Guwahati Chapter

Imphal Chapter

thOn 28 June 2018, a one day “Training on Self-infusion” for 11 patients was also held with Mr. Dhanmani Rajbongshi of Guwahati Chapter as resource person. This program was also hugely successful.”

thOn 11 April 2018, the Chapter Celebrated its Founder's Day by organizing a Blood Donation Camp and collected 41 units of blood.Dignitaries on the occasion were Mr. B.D. Bodhanwala

Jamshedpur Chapter


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(Vice Chairman of Jamshedpur Blood Bank), Dr. Amit Mukherjee (President HSJC & Chairman of Voluntary Blood Donor's Association, Jharkhand), Mr. Sunil Mukherjee (President of Voluntary Blood Donor's Association, Jharkhand), Mr. Sanjay Chowdhary (Chief Administrator of Jamshedpur Blood Bank), Dr. L.B. Singh (Jamshedpur Blood Bank) and Mr. Soumitra Hazra (Secretary HSJC). The programme received wide coverage in print and electronic media.

thOn 17 April 2018, the Chapter celebrated World Hemophilia Day at The Bengal Club, Sakchi, Jamshedpur in

which Dr. Maheshwar Prasad (Civil Surgon of East Singhbhum, Jharkhand) was the Chief Guest whereas Mrs. Alpana Bhattacharya (Secretary, ANWESHA NGO) and Mrs. Sheeba Rakhi Sinha (Social Worker) were the Guest of Honor. With over 125 participants the day was celebrated with great enthusiasm and four poor CwHs received educational support of Rs.5000/ each for one year.

While addressing the gathering, Dr. Maheshwar Prasad said that the District Health Department will also make every effort to bring the schemes being run by the government for Hemophilia patients.

The founder secretary of the chapter Soumitra Hazara said that due to expensive Hemophilia injections, poor people cannot buy it. Therefore, the chapter in association with the Government is trying to get the injections free for the needy patients.

On the occasion Dr. Ratan Kumar, Dr. Jayant Kumar and Dr. Kundan Kumar Sinha held a free physiotherapy camp for all the persons with Hemophilia. The event was widely covered in popular newspapers like Hindustan, Dainik Jagran and Prabhat Khabar as well as in DD News and local news channel.

thOn 8 May 2018, the Chapter celebrated World Hemophilia Day at Midnapore Medical College with a focus on raising Hemophilia Awareness and Prophylactic Treatment.

The Chief Guest on the occasion was Midnapore District

Magistrate. Nearly 40 resident doctors were present on the occasion including Dr. Panchanan Kundu (Principal, MMC), Dr. A.K De (HOD Paediatrics) and Dr. Sumon Roy (HOD Medicine). Nearly 85 PwHs and their family members also participated.

It was an important day as the medical college announced adult prophylactic treatment and improved treatment facilities for Hemophilia patients. On the occasion the chapter also distributed educational The Hans Foundationcheques for the poor student beneficiaries.

thOn 30 April 2018, the Chapter celebrated World Hemophilia Day at Manovikas Kendra.

Hemophilia Assay Test is now available for Rs.548 at AIIMS, Patna and Factors including Inhibitor Medicines will also be available soon. This has become possible due to successful lobbying by Chapter, Mr. Priyam Verma (Youth Group Motivator) and Er. A K Verma.

thOn 17 April 2018, the Chapter's Women Group Celebrated World Hemophilia Day and raised awareness on Hemophilia. On the occasion scholarship cheques were

Kharagpur Chapter

Kolkata Chapter

Patna Chapter


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distributed to 17 beneficiaries through the hands of Journalists from Dainik Hindustan (Ms. Rinku Jha and Ms. Charu), Hindustan Times (Ms. Nandani Verma) and BBC (Mrs. Situ Tiwari).

th thFrom 9 to 10 June 2018, the Chapter and Birla Institute of Technology in association with Pahal organized a National Policy Summit at BIT Patna Campus. The occasion was graced by Mr. Shishir Sinha (Hon'ble Chairman, Bihar Public Service Commission), Mr. Krishna Kumar Rishi (Hon'ble Minister of Youth and Sports, Govt. of Bihar), Mr. Kameshwar Jha (Hon'ble Vice Chairman, Bihar State Higher Education Council), Mr. Naval Kishore Yadav (Hon'ble MLC), Dr. B K Singh (Director, BIT Patna), Prof. Shirdhar Kumar (Coordinator NSS) and Mr. Kumar Shailendra (Secretary, HSPC)

thOn 11 June 2018, Mr. Kumar Shailendra also met H.E. Mr. Kenji Hiramatshu (Ambassador of Japan to India) in a roundtable conference "Japan Meets Bihar" at Patna.

stOn 21 April 2018, the Chapter celebrated World Hemophilia Day at Oil Lecture Hall, AMCH, Dibrugarh. Hon'ble Principal, Superintendent, HODs, doctors and various C/PwHs from various parts of upper Assam participated in the event. Principal of AMCH announced an order to hand over a hall to chapter under blood bank for opening of Hemophilia Day Care Centre with facilities of Prophylactic Treatment and Physiotherapy. Presentations on various aspects of Hemophilia were given by Prof. Sanjib Kakoty, Dr. Daisy Doley, Dr. Aditya Baruah, Dr. Anupam Dutta and Dr. Gayatri Gogoi. A newspaper article on Hemophilia Awareness by Dr. Gayatri Gogoi published on the eve of World Hemophilia Day was also exhibited. Cultural programmes were performed by Children with Hemophilia. Scholarship cheques were distributed by AMCH dignitaries. The Chapter also formally formed its Women and Youth Group.

thOn 29 April 2018, the Chapter celebrated World Hemophilia Day with support of Education Department of Ahmednagar Municipal Corporation and with an aim to raise awareness among school management, faculty and parents of Children with Hemophilia.

Nearly 55 PwHs were present with their family members along with Chapter Members, Youth and Women Group representatives.

Mr. Meher (Chief of Education Department, Municipal Corporation, Ahmednagar) was the Chief Guest and other dignitaries were Mr. Bhushan Bhandari (Social Worker), Dr. Amruta Gawali (Physiotherapist, Day Care Centre, Civil Hospital Ahmednagar), Mr. Sonyabapu Kusale (Social Worker), Mr. Avinash Karale, Mr. Umesh Shinde and Mr. Prasad Shinde.

Mr. Meher said that awareness in educational campus, teaching and non-teaching faculties is very important and he assured to continue it with support of Chapter and Local Government. Mr. Bhandari assured the participants of opening a Hemophilia Treatment Center in Ahmednagar. Mr. Gawali spoke on importance of Physiotherapy and Mr. Dada Bhalekar informed on the journey of the Chapter.

thOn 17 April 2018, the Chapter celebrated World Hemophilia Day with participation of 10 doctors and all the chapter patients and their families. Dr. G.S Kulkarni (President HSAC) and Mr. Ashok Mankar (Secretary HSAC) supervised the programme.

Tinsukia Chapter

Ahmednagar Chapter

Western Region

Aurangabad Chapter

Indore Chapter


12

thOn 17 April 2018, the Chapter conducted various activities to celebrate World Hemophilia Day. Mrs. Ujwala Nirwane (President, Women's Group) arranged an awareness camp for Homeopathic Medical College at Miraj and shared information on various aspects of Hemophilia with 85 students.

stOn 21 April the Chapter held second CME with support of Government Medical College & Hospital Kolhapur at hospital's auditorium.

Dr. Raghuji Thorat, Dean Govt. Medical College & Dr. L. S.

Dr. Mohan Patil (Professor of Pediatrics & Vice President, Chapter) conducted a CME with support of Kolhapur Pediatric Association at Dr. D. Y. Patil Medical College & Hospital. Dr. B. C. Patil (Medical Superintendent) inaugurated the CME as Chief Guest. Dr Mohan Patil informed on patient registration and Hemophilia Treatment Centre at Dabholkar Charitable Hospital, Kolhapur. Two Hematologist Dr. Abhijit Ganpule and Dr. Preeti Kamble educated the participants on Hemophilia diagnosis, treatment, prophylaxis and other aspects of the disease.

Continuous Medical Education (CME)s

Patil, Civil surgeon of C.P.R. Hospital inaugurated the CME by lighting a lamp. Nearly 80 participants including Doctors, Professor of surgery, Pediatrics, Orthopedics and nurses were educated by Hematologist on Hemophilia Care.

Awareness Programme

ndOn 22 April 2018, the chapter conducted an awareness cum interaction programme for PwHs and their families. 53 PwH & 40 parents attended the programme. QA session was held and participants interacted with Dr. Varun Bafana, Hematologist of Govt. Medical College Kolhapur. He promised them his help and guidance during on demand & Prophylaxis treatment. He also agreed to conduct regular clinic at HTC in Dabholkar Charitable Hospital every fortnight. On the occasion various competitions and entertainment programme were also conducted. Dr. Manjrekar Arvind, Mr. Kakade Giriraj distributed the prizes to the winners and Caps with logo of Hemophilia Society were distributed to the participants.

The Chapter celebrated World Hemophilia Day by "Patient Education & Awareness Programme". 153 participants including patients and their family members participated in the programme. Doctors present were Dr. Rajendra Trivedi (Dentist, Civil Hospital Mehsana), Dr. Varsha Chaudhary (Physiotherapist, Civil Hospital Mehsana), Dr. Ranjan from ONGC, Dr. Avinash Prajapati (Dharpur Medical College, Patan) and Mr. Jigar Sudthar (GGGDC). On the occasion

thOn 29 April 2018, the chapter celebrated World Hemophilia Day by organizing various activities such as drawing competitions, games, cutting cake and gift distribution. Mrs. Usha Parthasarthi (SOL Co-ordinator) was the Chief Guest on the occasion. 90 members participated in the programme including Dr. Hariyani, Dr. Irfan Qureshi, Dr. Saima Qureshi, Dr. Jyoti Thakur and Dr. Mahipal.

Kolhapur Chapter

Mehsana Chapter


13

gifts were distributed among all the C/PwHs and an announcement of giving 25% discount in fees for Hemophilia patients was announced by Tejas Computers and Tirupati Classes, Mehsana.

thOn 18 April 2018, the Chapter participated in World Hemophilia Day celebrations organized by Laxmiben Homeopathy Institute & Research Center, Bhandu under the supervision of Dr. Lipika (Principal). The chapter shared the information regarding C/PwH care and treatment with young future doctors.

This year the Chapter celebrated World Hemophilia Day thtwice. On 15 April 2018, first celebration was held at

Raghuleela Mall, Kandivali where performances by Hemophilia kids were organized to sensitize the visitors. LED Screen Display was put up and pamphlets were distributed to raise awareness and funds.

thOn 29 April 2018, second celebration was held at MLT Hall, KEM Hospital. Hon'ble Shri Ajay Chaudhary (Local MLA, Shivsena Vidhansabha) was the Chief Guest. The function began with release of balloons. A request letter signed by PwHs regarding shortage of medicines in Maharashtra was

handed to the Chief Guest. He assured to soon setup a meeting with the Hon'ble Chief Minister, Shri Devendra Phadnavis to address this issue. Felicitation of SSC, HSC, Graduates and Post Graduates were done. Various singing and dancing performances by PwHs and their families also took place in the programme.

thOn 7 June 2018, the Chapter held a meeting for C/PwHs between the age of 0 to15 years at Borivali Care Center. The patients were made aware on their nearest Hemophilia Treatment Centers so that number of patients can be reduced at KEM Hospital in the interest of optimum care.

Dr. Mamta Manglani and Dr. Ratna introduced the treating doctors of Borivali Care Centre and provided other needed information. After the meeting, all the members visited various facilities available at Borivali Care Centre.

ndOn 22 April 2018, the Chapter celebrated World Hemophilia Day with participation of 50 PwHs, their families and doctors. The Chief Guest Dr. Milind Mane (MLA, North Nagpur) assured complete and regular working of Day Care Centre at

Mumbai Chapter

Nagpur Chapter


14

DAGA Hospital at the earliest. Physiotherapists and guest speakers were also present and they conducted sessions of their expertise.

Sessions covered were "New Trends in Hemophilia" by Dr. Anju Kadu (Pediatrician), "Psychological challenges & measures to overcome them" by Dr. Aprana Bhalerao (Psycholog is t ) , "Benefits of Physiotherapy & Introduction to Disability Norms and Certificate" by Dr. Isaac Michel (Physiotherapist), "Benefits of Positive Thinking and Methods of Meditation & Breathing Techniques to manage the Pain and balance the life" by Mr. Nakul Agarwal (Spiritual-Motivational Speaker).

ndOn 22 April 2018, the Chapter and B.J Medical College jointly celebrated World Hemophilia Day at the latter's auditorium. Nearly 230 patients and parents attended. The Dean of BJMC Dr. Ajay Chandanwale was the Chief Guest. The program was conducted by Dr. Sonali Salvi and Dr. Prajakta Kulkarni. Mr. Anil Lalwani welcomed the guests and spoke on the Significance of WHD.

Doctors from BJMC spoke on importance of Physiotherapy and Dental Care in Hemophilia. Dr. Mahamuni, a well-known Psychiatrist from Pune motivated the patients. Followed by a cultural programme by patients and women's group. A drawing competition was organized for CwHs and prizes distributed with support of . Cycling kits were Novo Nordiskalso distributed among CwHs to motivate them for Cycling as an exercise.

Educational Scholarship Distribution with help of Children Hope India (USA)

The Chapter with support of Children Hope India (USA) distributed educational scholarship to 25 CwHs between the ages of 8 to 13 years from rural areas of Maharashtra. Children Hope India (USA) has been supporting the poor patients of chapter from many years and Mr. Hites Idnani (EC Member, Chapter) is the coordinator for this project.

Pune Chapter

Vadodara Chapter

Women Group Meeting

th On 9 June 2018, the Chapter's Women Group organized its meeting at one of its member Mrs. Sheetal Sain's home. They discussed home therapy and shared their knowledge on Carrier Detection & Pre Natal Diagnosis Tests.

thOn 25 May 2018, the Chapter celebrated World Hemophilia Day at Hotel Surya. Total 120 participants took part in the event out of which 57 were PwH families. Shri Dineshbhai (Chapter President) and Dr. Seema Bhatwadekar (Vice President, Chapter) spoke on Hemophilia Care and Treatment.

Many beneficial schemes of public and private sectors for Hemophiliacs were discussed. Physiotherapists present on the occasion have shown their interest to treat PwHs.


15

st ndOn 21 & 22 April 2018, the Chapter and Ashok Gondhia Memorial Trust jointly organized a programme to celebrate World Hemophilia Day at Atal Bihari Bajpai Auditorium Park Road, in which Mr. Jai Vasavada (Leading columnist and speaker) and Mrs. Nehal Gadhvi (Leading motivational speaker and teacher of differently-abled children school) appeared as main speakers. Nearly 750 participants took part in the celebrations.

Day 1 began with lectures on Basic Hemophilia Treatment, Physiotherapy, Dental Care, Self-Infusion Training, Prophylactic Treatment and Ayurveda therapy.

Dr. Vallabh Kathiria (Chairman Gausava Board Gujrat State and Ex-Minister), Dr. Kartik Sutaria, Dr. Hiren Kothari (President IMA), Dr. Vijay shah (Indu Health Care foundation, Baroda), Dr. Gavrang Buch (Senior physician), Dr. Yagnesh Popat (Pediatrician of the Society), Mr. Pravinsinh Mori, Mr. Ghanshyam Thakkar (Leading social worker) were the Hon'ble Guests.

Mrs. Nehalben Gadhavi spell bounded the participants in her hour long women empowerment speech on "Nari Tu Na Hari". Mr. Jay Vasavada spoke on perspective of pain in life in his hour long session themed "Dard ka Had se Gujar Jana, Khud Bakhud Dawa Ho Jana". Dr. Part Thakkar (PWH) played Guitar and shared his views on chapter development and association of Mr. Jay Vasavada.

Day 2 ended with Homeopathy / Physiotherapy Camp, The HANS Foundation Cheque distribution, Drawing competition and Prize Distribution. The event was widely covered by media and was broadcast live on social media.

st thFrom 21 to 27 May 2018, the Chapter also organized a Summer Camp for its C/PwHs. 36 C/PwHs participated. The camp covered activities such as Physiotherapy, Yoga, Games, B 'day Celebra t ions, Dance Mus ic and Entertainment.

Summer Camp

stOn 1 April 2018, the Chapter celebrated World Health Day thand Sparsh Physiotherapy Clinic's 11 Year of Completion at

Bombay Maternity & Surgical Hospital, Surat. Dr. Maulik Patel guided the participants and explained the role of Physiotherapy in Hemophilia.

Awareness Progamme

rdOn 23 April 2018, the Chapter celebrated World Hemophilia Day and 3 Successful years of Hemophilia Care Center. Nearly 90 patients with their families participated along with

World Hemophilia Day Celebration

stOn 21 April 2018, the Chapter Celebrated World Hemophilia Day in association with Ganpatishankar Ichharam Majmudar

Public Charitable Trust and Surat Pediatric Association by organizing a Poster Competition at Hemophilia Care Center, New Civil Hospital, Surat. Nearly 35 Nursing students of Government Nursing College Surat took part in it.

Rajkot Chapter Surat Chapter

thOn 17 April 2018, the Chapter, Indian Medical Associate, Family Physician Associate and South Gujarat Chamber of Commerce co-organized a Hemophilia Awareness programme at the l a t t e r ' s v e n u e o n b a s i c Hemophil ia facts & myths.

Over 50 participants including doctors and industrialists of S u r a t p a r t i c i p a t e d . T h e C h a p t e r ' s Yo u t h G r o u p

distributed Hemophilia pamphlets on the occasion.


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Dr. Mahesh Vadel, Dr. Mahesh Solu, Dr. Maulik Patel, Dr. Vijay Shah, other doctors and staff. The Chief Guest of the programme was Hon'ble Shri Harsh Sanghvi (MLA). Essar Group representatives were also present. In addition to awareness and motivating sessions, the contestants of Poster Presentation were given certificates and gifts from the Hemophilia Care Center.

Surgeries Supported by Chapter & GMC Hospital, Surat

thOn 12 May 2018, the Chapter also observed International Nurse Day and felicitated the Nursing Staff and Students of Hemophilia Care Centre and Government Medical College, Surat.

thOn 6 June 2018, the Chapter's Women and Youth Group organized a programme with support of their donors to distribute School Kits and Raincoats to Children with Hemophilia. Dr. Vijay Shah (Paediatrician, HOD) was the Chief Guest in the programme.

Shubham Rajubhai Kharatfrom Nashik (Maharashtra)

Aged 16, Factor VIII Deficient with Inhibitor

He was admitted with Intracranial Bleed (IC)in Government thMedical College, Surat on 8 May 2018. He was immediately

given 6gm Novo7 and later 2500 IUs of Feiba for 12 days.

He was successfully operated for hip implant removal at Government Medical Hospital, Surat. He was given 12mg of Novo7 at the time of surgery and 3mg Novo7 every 12 hours for 2 days.

Sabbir BhattiFactor VIII deficient with Inhibitor

The chapter celebrated World Hemophilia Day. On the occasion physiotherapy training was given and The Hans Foundation Scholarship cheques were distributed among the beneficiaries.

stOn 21 April 2018, the Chapter Celebrated World Hemophilia Day at Shikshak Sadan, Ernakulam, Cochin. 56 PwHs with their parents took part in the celebrations. The guests present were Sister Dr. Shiji Francis (Physiotherapist Lissie Hospital & HTC Aluva), Dr. Nishad and Mr. Manpreet Singh (Business Unit Director, Grifols India). The participants received valuable information on Hemophilia from the guests as well as medical check-up procedure.

Angamaly Chapter

Cochin Chapter

Southern Region


17

Orientation Programme for Doctors of District Government Hospital, Davangere

The Chapter with support of organized the orientation Shireprogramme "Recent Advances in the Management of Hemophilia" for Specialist Doctors of CG Hospital, Davangre. Dr. Neelambika (Superintendent) inaugurated the academic programme and highlighted government's efforts in Hemophilia & Thalassaemia Care.

Dr. Suresh Hanagavadi (President, Chapter) moderated the discussions with the participation of Mr. Nagabhushan (Shire Representative). Mr. Ankit Panthri (Shire Representative) made a presentation on Recent Concepts in Hemophilia Care.

thOn 28 April 2018, the Chapter celebrated World Hemophilia Day with Children & Youths with Hemophilia and their families. 300 members participated in this program. Celebrity Mr Chethan Kumar (A young Kannada Actor) was the Chief Guest.

Balloons were released as a symbolic representation to “Releasing all our pain into the sky”.

Mr. Chethan Kumar spoke on Hemophilia & appealed the public to support the cause. He met with all the patients, understood the problems they are facing and assured complete support to the Chapter.

The Hans Foundation cheques were also distributed on the occasion to the beneficiaries. The programme was very well covered by the print and electronic media. The event was broadcasted live on Facebook by Chapter’s youth.

World Hemophilia Day Celebration

thOn 16 April 2018, the Chapter and Coimbatore Medical College Hospital jointly celebrated World Hemophilia Day at latter's premises. Nearly 150 participants including 100 PwHs and their family members participated. Faculty of Paediatric and Medicine Department of CMCH were also present. Balloons were released by the Chief Guest Mr. R. Mahalingham (Airport Director) along with Dr. B. Asokan (Dean, CMCH) and Dr. Usha (Nodal Officer, In-Charge of Hemophilia).

A small meeting was also held which the faculty of Paediatric & Medicine Department. During the meeting Chapter requested for an exclusive nurse for Hemophilia Treatment Centre which was accepted. Chapter also felicitated all the assistant professors of both the departments of CMCH.

st nd On 21 and 22 May 2018, the Chapter with the support of SOL organized a summer camp themed as Sanjeevani (A Boon of Joy) for nearly 100 PwHs and their parents at Isha Yoga Centre. Over the period of 2 days many fun activities were carried out for children, youths and their parents. The staying arrangements for the participants were at Windsor Garden Resorts. Games such as Balloon bursting, Newspaper quiz, drawing competition and Clay Moulds for children were arranged. Counselling session by Dr. A. Sree Devi, M.Sc., MDMP (Psychology) were also arranged for Children and Women.

Summer Camp

Davangere ChapterCoimbatore Chapter


18

Gangavathi Chapter

Hubli-Dharwad Chapter

Kottayam Chapter

Kannur Chapter

th On 17 April 2018, the Chapter along with its 20 PwHs and their parents celebrated World Hemophilia Day at Chandrika Children Clinic, Gangavathi, Koppal District. Dr. Patel (Physician) and Dr. Joshi (Paediatrician) educated patients on Hemophilia and related bleeding disorders. Later The Hans Foundation Scholarship cheques were distributed among the beneficiaries.

(Additional Prof. and Nodal Officer of Hemophilia Clinic) etc.

A Scientific Session was also arranged on Physiotherapy under the guidance of Dr. Chithra. A coagulometer was also purchased on request of Chapter and Factor Assay was done for 25 members under the supervision of a Hemophilia trained doctor and technical staff.

Surgery Supported: The Kottayam Medical College also successfully conducted an emergency operation of a Chapter's member following his car accident. The operation was conducted by Dr. Tiji Thomas Jacob (Additional Prof. of Ortho) and his team. It was the first operation of a Hemophilia Patient in this medical college.

thOn 26 April 2018, the Chapter celebrated World Hemophilia Day at District Hospital Dharwad. Over 100 PwHs participated. Dr. Girish Kuknoo (District Surgeon), Dr. V D Karpurmath, Dr. Umesh Hallikeri, Dr. Kavita Kore and Dr. S P Shettar also participated in the celebrations. A memorandum was submitted to District Surgeon to start Prophylaxis and assurance was given to start it as soon as possible.

thOn 28 April 2018, the Chapter celebrated World Hemophilia Day at PTA Hall, Kottayam Medical College. Over 200 patients and their parents from nearby areas such as Idukki, Pathanamthitta, Alleppy, Kollam and Kottayam District participated in the function. Adv. Suresh Kurup (MLA) was the Chief Guest and he inaugurated the programme. The participants had the opportunity to learn invaluable information on Hemophilia by doctors such as Dr. Jose Joseph (Principal,Medical College), Dr.Priya (DMO ,Kottayam), Prof. Julie Joseph (Gov. Nursing College), Dr. Chithra (Prof & HOD,PMR, Medical College), Dr. Antony (Dental College), Dr.Latha (Dept. of Pathology), Dr. Jayaprakash (Institute of Child Health), Dr.Unnikrishnan (Dept. of Gastroenterology) and Dr. N.N. Padmakumar

st On 1 May 2018, the chapter conducted its Annual General Meeting and also held World Hemophilia Day celebrations at Pariyaram Medical College. Dr. Urmila K V welcomed the participants and Dr. K Sudhakaran (Principal, Pariyaram Medical College) presided the proceedings. The programme was inaugurated by Shri Jayapalan (Jilla Panchayat Education Standing Committee Chairman and Former Chairman of Pariyaram Medical College Governing Body).

Medical sessions on “Hemophilia Management” by Dr. Chandran K (Malabar Cancer Care Center, Thalassery), “Inhibitor Screening & Prophylactic Treatment” by Dr. Hitha B (Haematologist, GMC, Kozhikode) and “Importance of Physiotherapy by Ms. Rincy (HTC, Aluva) were conducted on the occasion.


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Kunnamkulam Chapter

Manipal Chapter

thOn 17 April 2018, the Chapter observed World Hemophilia Day at Kannan Memorial Charitable Trust Hall. Kerala University of Health Sciences Vice Chancellor Dr.M.K.C.Nair inaugurated the function. Under the leadership of Dr.Susheela Innah (Vice Principal, Jubilee Mission Medical Collage Thrissur) a panel discussion was held on Hemophilia and related bleeding disorders.

Dr.V.T.Ajithkumar (Professor,Govt.Medical College Manchery), Dr.(Sr) Merli (Physician, St.Antony's Mission Hospital Pazhuvil), Dr. Muhammed Rafi (Associate Professor, Jubilee Mission Medical Collage Thrissur), Dr. Jithu.U (Orthopedic Surgeon, Govt. Thaluk Hospital Chelakkara), Dr.Jini (Transfusion Medicine, Jubilee Mission Medical Collage Thrissur), Mr.Subin Chunkath (Clinical P h y s i o t h e r a p i s t ) , P r o f . N . N . G o k u l d a s , M r. E . Raghunandanan, Mrs. Sobhanabai, and Adv. Rema Raghunandanan were the participants in panel discussion.

th thFrom 27 to 29 April 2018, the Chapter conducted the summer camp for Persons with Hemophilia and their families at Dr. TMA Pai, Polytechnic, Manipal in which nearly 130 participants from various regions of Karnataka State attended. Dr. T Ranga Pai (Academic Coordinator, Dr TMA Pai Polytechnic, Manipal) was the Chief Guest. Mr. Narendra Pai (Principal, Dr TMA Pai Polytechnic, Manipal) released the membership form for the KHR registry for PwH

enrolment. Mrs Anjalin D'Souza presented the activity report of World Hemophilia Day celebrated in different regions such as Udupi, Dakshina Kannada, Kundapura, Shimoga & Uttara Kannada. On the occasion, patients who have had “Joint Bleeds” were given Factor Therapy with support of HFI.

ndThe 2 day of Asha Kiran witnessed another programme titled as 'Kshema Samvada” and having the theme 'Sharing knowledge makes us Stronger' was conducted at UVA Meridian Resort, Kundapur. The programme was jointly organized by Chapter and National Health Mission (NHM), Government of Karnataka. Over 100 PwHs and their families along with 20 health care professionals from Udupi, Dakshina Kannada, Chikkamagaluru & Uttarakannada districts participated.

Dr.Swatantrakumar Banakar (Deputy Director & Chief Nodal officer, State Blood Cell, NHM, Govt. of Karnataka) was the

Chief Guest. He assured regular factor support in district hospitals. Mr. Somu Shekhar (Member, NHR Committee, HFI) educated the participants on NHR.

Mrs. Sulochana & Mrs. Anjal ine D'souza (Nurse Coordinators, Chapter) demonstrated Self-Infusion and First-Aid measures. Ms. Sathyashree (Member, Bangalore Chapter) interacted with women caregivers on psycho-social aspects of Hemophilia.

rd3 day of the camp began with Physiotherapy under the guidance of Mr. Ganesh Balthilaya, Mr. Rajesh and his team. Thera-band exercises were demonstrated to the participants. All the participants were given Thera-bands and elastic crape bandages. scholarship The Hans Foundationcheques were also distributed to the beneficiaries.

Asha Kiran 2018 – Summer camp

Mysore Chapter

Hemophilia Rehabilitation CampthOn 13 April 2018, the Chapter organized a Hemophilia

Rehabilitation Camp in association with Health Department, Government of Karnataka at Hotel Ruchi The Prince, Hunsur Road, Hinkal, Mysore. Chief Guest of the occasion Hon'ble


20

Shri KB Shiv Kumar IAS (Deputy Commissioner of Mysore) inaugurated the camp and he assured complete support from the districts administration. The camp saw participation of 200 people which included patients, volunteers and 60 doc to rs f rom 6 d is t r i c ts i .e . Hassan, Kodagu, Chamarajnagar, Mandya, Shivamogga and Mysore. It was announced that 66 patients who have enrolled themselves in the Karnataka Hemophilia Registry (KHR) will soon be given KHR Card. The camp had many sessions on several Hemophilia related topics explained by the guests through presentations, demonstrations and interactions.

rdOn 23 April 2018, the Chapter celebrated World Hemophilia Day at Mahatma Gandhi Square, Beach Road, Pondicherry with support of HFI. Nearly 100 members, P/CwHs and their families participated. Dr. K. V. Raman (Director of Medical Services, Puducherry) was the Chief Guest. He flagged of a walkathon on the beach by P/CwHs, Youth and Women Group. They wore red T-Shirts, carried the banners and distributed pamphlets about Hemophilia to sightseers on the beach. On reaching the Gandhi Square, balloons were released to commemorate the occasion. The T-Shirts and Balloons were sponsored by . A film with Novo Nordiskvisual representation of Hemophilia was also screened and the youth members distributed pens to the public.

Speaking on the occasion Dr. K.V Raman appreciated the services of Dr. P. Nalini and was happy that PwH were getting the necessary Factor treatment. He then distributed The Hans Foundation scholarship cheques to 6 CwH beneficiaries.

thOn 24 May 2018, the Chapter offered a wonderful swimming experience and an unforgettable trip to its P/CwHs and their parents at KK Farm Resort. After hours of fun-filled

swimming and sumptuous lunch, the Women and Youth Group members taught self-infusion to others. 50 PwHs received Factor VIII, 6 PwHs received Factor IX and 4 received VWD factor (Immunate) for infusion. The chapter's secretary Mr. Vaithiyanathan also had his birthday on the same day and all celebrated it by cutting a cake.

thOn 17 April 2018, the Chapter celebrated World Hemophilia Day at 5 government district hospitals of districts Guntur, Kakinada, Vijayawada, Machilipatnam and Ongole with support of .Novo Nordisk

The Youth Group along 40 PwHs and their parents celebrated the WHD at Guntur. Dr. Raju (Superintendent), Mr. Aditya Narayana (RMO), Dr. MS Raju (HOD, Pediatrics), Dr. Veereswar Rao (from Paediatric Department), Mr. Padmanabham (Medical Store) and Mr. Venkateshwara Rao (Eenadu Reporter) were present on the occasion. The doctors promised to give special room for the Hemophiliacs including NTR Vidya Seva for emergency treatment.

At Kakinada, the Chapter's East Godawari District Group organized the function in which 45 PwHs participated. The doctors present on the occasion were Dr Raghavendra Rao (Superintendent), Dr Kiran (HOD), Dr. Venkateswarlu (Paediatric HOD), Dr Krishna Prasad (Paediatrics Dept.) and Mrs. Satya Vani (from Blood Bank). The doctors gave valuable suggestions and discussed the problems faced by Hemophiliacs.

At Vijayawada, the Chapter's Krishna district and West Godawari district youth group celebrated WHD at Siddhartha Medical College & Hospital, Vijayawada, Krishna District. 42 PwH attended this meet with their parents. Participating doctors were Dr Chakradhara Rao (Superintendent), Dr Venkata Krishna (Assistant General Medicine), Dr Sekindar (Paediatric HOD), Dr Siddheswari (HOD), Dr Nirmal Kumar (Physician) and some PG doctors.

At Machilipatnam, the Chapter's Krishna District youth group celebrated WHD at Government General Hospital, Machilipatnam, Krishna District. 15 PwHs attended with their parents.

At Ongole, the Chapter's Prakasam District youth group celebrated WHD at RIMS, Hospital, Ongole, Prakasam District. 38 PwHs attended with their parents. Doctors present were Dr. Rajeswar Rao (Superintendent), RMO, Padmaja (Head Medical Stores) & Dhana Lakshmi (Pharmacist).

At all the locations the chapter members and patients distributed flowers, sweets and calendar to the hospital faculty to show gratitude for their support and services.

Swimming Camp and Self Infusion

Pondicherry Chapter

Vijayawada Chapter


21

On the occasion of World Hemophilia Day, the Chapter organized a Walkathon at RK Beach, Visakhapatnam. Youth members wore red t-shirts and Women members were in red sarees to mark the day. The passers-by were sensitized on Hemophilia Disorder. Later sweets were distributed in the faculty of KGH Govt. Hospital as a gratitude for free factor treatment being given to P/CwHs.

thOn 15 April 2018, the Chapter marked its Silver Jubilee and also observed World Hemophilia Day by organizing an awareness programme with support of Novo Nordisk, Grifols and HFI. 147 participants including 83 PwHs took part. Dr. Nishant Singh (Representative Grifols) was the Chief Guest and he gave a presentation on "Challenges in the treatment of Hemophilia patients". Dr. P. Ravi Shankar and Dr. V. Chandra Sekharam did medical check-ups of the patients. scholarship cheques were The Hans Foundationalso distributed to 5 beneficiaries.

st On 1 June 2018, the chapter with the help of some of its members donated a Refrigerator to Paediatric Department, KGH Govt. Hospital to store and preserve Anti Hemophilic Factor. Dr. Venugopal (HOD, Paediatric Department) had accepted this donation.

th On 17 June 2018, the Chapter conducted a Physiotherapy Workshop at Dr. RaviShankar's Physiotherapy Clinic. 20 Youths with Hemophilia participated and practised various physiotherapy exercises to strengthen their Ankle, Calf, Knee and Hip Joints under the guidance of Dr. Ravi Shankar. The day also happened to be the Father's Day and all the youths paid gratitude to Mr. K. Saibaba (Chapter's Secretary) who was then asked to cut a cake to mark the day.

thOn 17 April 2018, the Chapter celebrated World Hemophilia Day at Karunya High School, Hanamkonda. Dr. J. Chiranjeevi (HOD, Vaagdevi College of Physiotherapy) was the Chief Guest and he explained the role of physiotherapy in Hemophilia. Other senior members also educated their members on essence of WHD, awareness, carrier detection and prenatal diagnosis tests to make a Hemophilia free nation.

Physiotherapy Workshop

Walkathon

Visakhapatnam Chapter

Warangal Chapter


22

thOn 15 April 2018, the Chapter distributed The Hans Foundation Scholarship cheques to 12 Children with Hemophilia. The programme was attended by 40 participants including beneficiaries and their parents.

thOn 13 May 2018, the Chapter organized its Annual General Meeting cum Hemophilia Awareness Programme at Red Cross Society Warrangal. The dignitaries on the occasion were Dr. Chandrasekhar Valapadasu (Principal, Kakatiya Govt. Medical College, Warangal), Dr. Vijayachander Reddy (MS –Ortho) (Chairman, Red Cross Society, Warangal), Dr. G. Vijaya Kumar (Head – Dept. of Paediatrics, Mahatma Gandhi Medical College, Warangal), Dr. J. Chiranjeevi (Head – Dept. of Physiotherapy, Vaagdevi College of Physiotherapy, Warangal) and Sri. E.V.S. Srinivas Rao (State Executive Member, Red Cross Society, Telangana).

Dr. Vijayachander reddy shared his experiences of last two decades with Hemophilia patients and assured complete support of Red Cross Society. Dr. Vijaya Kumar while addressing the gathering requested the Government to setup Hemophilia Care Centre for Warangal as it has got a large Medical Hospital for five districts of Telangana state.

The Hans Foundation Scholarship

Annual General Meeting

EDITORIAL BOARD

Mr. Vikash C. GoyalMr. Mukesh Garodia

Veteran Wg. Cdr. SS Roychoudhury

Mr. Pawan Madhukar

Hemophilia Chronicle is available on our websitewww.hemophilia.in in PDF file format.

Hemophilia Federation (INDIA)Communication Department

A-128, Mohammadpur,

Behind Bhikaji Cama Place,

New Delhi - 110066

Tel: 011-26174020/26175791/26168152

Fax: 011-26177209

General email id : [email protected]

Website: www.hemophilia.in

Hemophilia without DisabilityChildren Free of Pain

Send your feedbacks, queries, news, articles to:

[email protected] or write to:

Content & Design

Development

Pawan Madhukar(Manager, Communication & IT)

We express our deep sorrow on the sad demise of our beloved friends. May their souls rest in Peace and may God give strength to their family members for this

unbearable loss.

Late Kamlesh Negi Aged 25, Severe Hemophilia A Patient

Member of Dehradun Chapter(Died due to Typhoid with GI Bleed)

Late HiteshAged 18

Member of Mandi Chapter(Died due to GI Bleed)

OBITUARIES

MR. P. SHIVAMSR. EXECUTIVE - DONATION BOX

HEMOPHILIA FEDERATION (INDIA)

HIGHEST COLLECTIONS RECEIVED FROM TOP 10 DELHI/NCR OUTLETS

For Year 2017 - 18

1

2

3

4

5

6

7

8

9

10

KANDY'S PASTRY PARLOUR (Kalkaji)

LE MARCHE

SAGAR RATNA

GUARDIAN LIFE CARE

SHREE RATHNAM

KARNATAKA RESTAURANT

HALDIRAM'S

COBB

HIRA SWEETS

ANUPAM SWEETS & RESTAURANT

HFI is grateful for the assistance

of above.

Rs.71,720/-

Rs.38,360/-

Rs.31,555/-

Rs.29,950/-

Rs.25,185/-

Rs.24,890/-

Rs.23,515/-

Rs.21,920/-

Rs.18,330/-

Rs.18,310/-


23

CHAPTER / SELF HELP GROUP(SHG) KEY PERSON CONTACTS 2018AgraMr. Manoj Kr. Sharma(971-921-4748)[email protected]

DelhiMr. Anil Kr. Gupta (935-092-6952)[email protected]

KanpurMr. Rajesh Bhasin (983-903-4658)[email protected]

PalwalMr. Vikash Sharma

[email protected]

AurangabadDr. G. S. Kulkarni(932-345-2809)[email protected]

JabalpurMrs. Kiran Gangrade(992-635-7454)[email protected]

PuneMr. Ashok Deokar

[email protected]

ThaneMrs. Geeta Gadkar(932-404-1884)[email protected]

BhubneswarMr. Chittaranjan Das (986-154-9667)[email protected]

SiliguriMr. Maniklal Mitruka(983-207-4542)[email protected]

VaranasiMr. O. P. Pandey(941-522-3214)[email protected]

BareillyMr. Narendra (941-149-4666)[email protected]

JaipurMr. Shubham Khandelwal(823-948-2541)[email protected]

KarnalMr. Pramod Kumar (9416301285)[email protected]

PanchkulaMr. Rajat Singhal(941-731-5585)[email protected]

Bhavnagar (SHG)Mr. Girish Joshi(970-215-8589)[email protected]

CochinMr. Vinod A (949-623-8097)[email protected]

HassanDr. Palasha H. K. (944-806-9582)[email protected]

Karaikal

[email protected]

ManipalDr. Annamma Kurien(984-582-1201)[email protected]

KolhapurArvind D. Manjrekar(982-284-9584)[email protected]

Raipur (SHG)

[email protected]

VadodaraMr. Dinesh P. Vadhadia (982-503-1675)[email protected]

Bhojpur (SHG)Mr. Chandan Kumar (0765-401-0588)[email protected]

JamshedpurMr. Soumitra Hazra(943-113-3985)[email protected]

ImphalProf. A. Meina Singh (943-602-7164)[email protected]

TinsukiaMr. Debasish Dutta(995-441-8733)[email protected]

YamunanagarMr. Vishnu Goel(9813385618)[email protected]

Bhiwani (SHG)

[email protected]

Jaisalmer (SHG)Mr. Mahendra Singh(9636711584)[email protected]

KupwaraMr. Ahmed Ali Saha (979-706-4981)[email protected]

Patiala (SHG)

[email protected]

BhopalDr. R. K. Nigam(942-500-5688)[email protected]

CoimbatoreMr. G. Narayanaswamy(989-409-8897)[email protected]

HubliMr. Raju Kundanhali(984-402-5877)[email protected]

KottayamMr. K. K. Kunju(984-796-7590)[email protected]

MysoreDr. S.K Mittal(998-024-6400)[email protected]

TrivandrumMr. Jimmy Manuel(944-746-1644)[email protected]

AngamalyMr. Paul Nettikkadan (0484-245241)[email protected]

MehsanaMr. Dhaval Modi (942-770-5362)[email protected]

Ratnagiri (SHG)Mr. Vijay Shinde(942-1136-727)[email protected]

BrahmapurMr. Trilochan Nayak (993-746-5600)[email protected]

KharagpurMr. Tarak Mondal (987-499-5178)[email protected]

AhmedabadMr. B.K Modi(792-217-4460)[email protected]

BikanerMr. Devilal Pareekh(992-806-3716)[email protected]

JammuMr. Jagdish Sharma(941-918-5260)[email protected]

LucknowMr. Vinay Manchanda(941-503-3555)[email protected]

AgartalaMr. Siddhartha Saha (977-414-4294)[email protected]

Rohtak

[email protected]

DhuleMr. Harshal Kale(879-380-3877)[email protected]

CuddapahMr. Prasad (944-016-5512)[email protected]

HyderabadDr. V. Ramarao(984-987-2111)[email protected]

KunnamkulamMr. E. Raghunandan(984-762-2366)[email protected]

PondicherryDr. P. Nalini(944-332-2738)[email protected]

VelloreDr. Ikram(984-302-5146)[email protected]

Anantapur (SHG)Mr. Udayagiri Achari(944-041-2935)[email protected]

MumbaiMr. Paresh Parmar(982-117-4260)[email protected]

RajkotMr. Kiranbhai Avasia(982-405-9547)[email protected]

KolkataMr. Ravi Shankar Ojha (983-058-1465)[email protected]

PatnaMr. Kumar Shailendra(943-101-1115)[email protected]

AhmednagarMr. Dada Bhalekar(942-378-9251)[email protected]

ChandigarhDr. Harpreet Singh(981-401-3875)[email protected]

JindAshutosh Sharma (941-638-8743)[email protected]

LudhianaMr. Joginder Kumar (941-793-3020)[email protected]

BhadrakMr. Kamal Lochan Sahoo(943-726-6324)[email protected]

SrinagarMr. Syed Majid (990-656-2111)[email protected]

PanajiMr. Prasad Arolkar(950-302-1879)[email protected]

DavangereDr. Suresh Hanagavadi (872-220-9404)[email protected]

KanyakumariMrs. Geetha Ramesh(904-785-1406)[email protected]

MadrasMr. Sathyanarayanan(984-172-6576)[email protected]

SalemMr. R. R. Venkatasubramaniyan (999-445-6170)[email protected]

VijayawadaDr.Maganti Prasad(949-012-6837)[email protected]

TirunelveliDr. R. Anburajan (944-261-2138) [email protected]

VisakhapatnamMr. K. Saibaba(944-064-1835)[email protected]

TrichyMrs. Tara Sundarajan(934-512-7608)[email protected]

WarangalMr. N. Suman Kumar(998-565-1472)[email protected]

BangaloreMr. Premroop Alva (988-605-0060)[email protected]

NagpurAnuradha Sambre (982-306-6721)[email protected]

Satara (SHG)

[email protected]

DurgapurMr. Ajoy Roy (947-464-0064)[email protected]

RanchiMr. Santosh Kr. Jaiswal(943-152-8931)[email protected]

DehradunMr. Deepak Singhal (941-295-4711)[email protected]

JodhpurMr. Jitendra Prajapat(979-967-3593)[email protected]

MandiSh. Samar Singh(941-811-7745)[email protected]

BhagalpurMr. Akhilesh Rai (990-540-5077)[email protected]

UdaipurMr. Babulal Purohit(941-423-4772)[email protected]

IndoreDr. D. R. Haryani (0731-2478353)[email protected]

GangavathiMr. Ramakrishnan(962-038-3849)[email protected]

KannurDr. K. Sudhakaran(949-536-9978)[email protected]

MaduraiMr. J. Selvajanki(994-226-8481)[email protected]

CalicutMr. Sadhik V. P.(984-722-3299)[email protected]

NasikDr. Ranjana Kulkarni(982-339-0721)[email protected]

Surat

[email protected]

GuwahatiMr. Mukesh Garodia (986-402-3021)[email protected]

RourkelaMr. R. S. Dash(943-704-6662)[email protected]

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Registered with Registrar of Newspapers for India Vide R.N.I No. DELBIL/2014/56726

Printed & Published by Wg. Cdr. (Retd.) SS Roychoudhury for and on behalf of Hemophilia Federation (India)at A-128, Mohammadpur, Behind Bhikaji Cama Place, New Delhi - 110066

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