dorica dan.7 years of apwr

8/8/2019 Dorica Dan.7 Years of APWR

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The second Eastern European Conference on Prader WilliSyndrome, Zalau 29-30 October 2010

The Romanian Prader Willi Association Prader Willi Syndrome

a model for approaching rare diseases in Romania

Dorica Dan president RPWA/ RONARD, BoD member of EURORDIS & IPWSO; EU CERD member;


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Goal :

y To assess the results of 7 years of activity of RPWA in Romania in order to

ensure an increased quality of life for patients with rare diseases, using thecomprehensive approach in the management of one of these diseases: PWS.


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Once upon a time

y

If we take a look at our way back.

y How would you describe it? Contented? Exciting?Stressful? Moving forward? Holding back?

y

There are things we dream of doing one day, there arethings we wish we could forget or change...

y What would your life look like if you could start overagain with NO PROBLEMS?


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Who am I?

y I am Oanas mother. She has

PWS.

y We have a loving and caring

family.

y I am here today with you to tell you

my story having a daughter with

PWS in Romania and starting the

movement for people with PWS and

RD in Romania.


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No one can be perfect, or have a perfect life. But

every one of us has the right to have the opportunityto experience the everyday challenge.

Learning from mistakes cant be stolen from anybody!

Living with a rare disease is hard, as a rare disease is

no more RARE when it affects someone you love and

care.


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Rare diseases

1 in 2000 means:

y Isolation

y Loneliness

y Forgotten

y Vulnerability

y

LESS HOPE


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Rare diseases

6000 to 8000

different rare

diseases

almost NO HOPE


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Living together, learning together


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We cant imagine a different life

We really love:y seeing her doing things

which had not been thoughtpossible.

y the loving, funny, caring andkind personality of learning

to be patient and tolerant.

y her own way to see aperfect world around.


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The Beginning

Romanian PraderWilli Association has been established in May2003 and the Information Centre for Rare Genetic Diseases wasofficially opened on the 16th of October in 2005.

It is the first centre of this kind in Romania and we wanted it to be aresource centre for patients who suffer from rare genetic diseases,

their families, and professionals involved in diagnosis andmanagement of these diseases.


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Steps taken by Romania in this field

May, 2003 - Establishment of PraderWilliAssociation in Romania RPWA;

October 2005 opening the Center for Information aboutRD

June 21 - 24, 2007 The Sixth International Conference on PraderWilli Syndrome and

Rare Diseases, Cluj-Napoca;

August 9th, 2007 - Establishment of the Romanian National Alliance for Rare

Diseases RONARD;

August 10th, 2007 - first working group meeting to develop the National Plan,

held at the Information Centre for Rare Diseases, Zalau;


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November 1- 3, 2007 - the first national conference on rare diseases "Rare

diseases- From evaluation the needs to establish priorities";

February 29th, 2008 -The First European Rare Disease Day Campaign finalized

with a partnership established with the Ministry of Health Romania Rare

Diseases, a priority for health care in Romania in order to finalize and implement

the NPRD in Romania;

(Rare Disease's Day campaigns continued in 2009 and 2010, at

international level);


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2009 -2011- Regular meetings of working groups on NPRD - National

Plan for Rare Diseases, forming the National committee for rarediseases through the project: Norwegian Romanian (NoRo) Partnership

for Progress in Rare Diseases ;

June 2009- Balkan Congress for Rare Diseases, Cluj-Napoca;

Europlan conferenceJune 2010;


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Development:

We started out as 4 people..now we have hundreds of

members affected by different rare diseases all over thecountry;

Established the Center for Information about Rare GeneticDiseases in Romania;

Involved professionals and professionals organizations in

our activities;Became members ofnational, European and internationalnetworks;

Developed direct services for patients, families andprofessionals;


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We are ALWAYS looking:

for other families and organizations as there are a

few people in every community with similarexperiences;

to build the rare disease community in Romania;

to advocate for patients and raise awareness on rarediseases;

to improve access to care for patients and helpdevelop public health policies;

to fostertherapeutic development and research;

and funding our activities;


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PWS approach as a model for RD

weight management

physical therapies

speech therapy

behavior therapy

educational interventions


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Services provided by RPWA

Through different projects, RPWA became more

professional in providing socio-medical andeducational services for PWS and rare diseases.

We are accredited for our services, provideauthorized training courses and we are

accredited for research capacity and for

continuous medical education.


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Activity at national level

Established RONARD- Romanian National Alliance for

Rare Diseases: 32 founding members;

Partnerships with: National Doctors Collegiums,

Romanian Medical Genetics Society, IPWSO,

EURORDIS, Orphanet, RENINCO, COPAC, PeaceCorps, Ministry of Health Romania, Local Authorities,

St. Family Church, School Inspectorate Salaj, PWA

Norway and FRAMBU;


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European and international

level:

Members ofEURORDIS and IPWSO;

EURORDIS has opened the doors to find the best practices and researchopportunities of rare diseases at European level by involving the NationalAlliances in different projects.

Coordinating actionsand encouraging participation of

patients in information campaigns,advocating for medical and socialpolitics.Involving the newly formedAlliances in the Council of National Allianceshas created opportunities to learn and

have access to the best practices in the field of RD.


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Services offered:

Information and counseling;

Helpline;

Behavioral therapy;

Personalized therapy for patients with rare diseases;

Training for personal assistants;

Information and training for specialists;

Lobby and advocacy;

Social activities and community integration for people affected by rare

diseases.


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OBJECTIVES:

1

. to fac

ilit

at

e acc

esst

o informat

ion about rare diseases2. to create a national data base on rare diseases3. to create a support network among patients affected by the same disease4. to create a support networkbetween specialists and families5.to stimulate researchin the field of managing rare diseases6.to collaborate with international organizations and networks7. to encourage early diagnosis

8. to prevent and manage disability at all levelswww.apwromania.ro


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Providing services

Through different projects, RPWA became more professional

in providing socio-medical and educational services for PWSand rare diseases.

We are accredited for our services, provide authorized

training courses and we are accredited for researchcapacity and for continuous medical education.


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NATIONAL PLAN FOR RARE

DISEASES

The Romanian NATIONAL PLAN FOR RARE DISEASES -created with 4 stages:

1. The identification of needs, fields of intervention;

2. The creation of the plan itself , involving other parties;

3. The public debate phase, as well adjustments according to

opinions expressed during theN

ational Rare DiseaseConference, November 2-3 2007: Rare Diseases fromIdentification of Needs to Establishing Prioritiesandexpressed opinions of the experts;

4. The signed partnership agreement with the Ministry ofHeath to implement the NPRD in Romania on 29th of

February 200

8;


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Aim :

To improve the quality of life for people affected by rarediseases in Romania by providing equal access to earlydiagnosis, quality treatment and rehabilitation services.


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Strategic approach:

y Coordinated actions at EU and national level (EURORDIS projects: RDD,organizing the national conferences)

y EUROPLAN CONFERENCE to assess the needs and design nationalstrategies;

y Date & place ofthe National Conference

y

18-19 June, Bucharest, The Houses ofParliament

y www.bolirareromania.ro

y http://anbraro.wordpress.com

y www.apwromania.ro


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Actions:

y Resolution of EUROPLAN Conference sent to

MoH together with the following documents:x National Plan for Rare Diseases;

x The manifesto "Solidarity for Health presented

by Salaj parliamentary group;

x The sustaining message from Romanian

Doctors Collegium


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Current situation:

NOT ENAUGH INFORMATION: lack of diagnosis, late or

inaccurate diagnosis.not very involved authorities;

permanent changes at political level generated a lot ofconfusion

No screening or not real screening;

Lack of epidemiological data and surveillance

No inventory of current research projects


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Challenges:

Treating, managing and preventing rare diseases might be seen as a

heavy social and economic burden on Romanias budget.

in fact, reorganizing and better allocated existent resources

conduct towards our goals with small financial efforts.

There is a needto organize the centers of expertise, train

professionals, promote the latest research findings and bestpractice for rare diseases, health technology assessment and

registries.

We can use the existent social services with a proper training:

www.apwromania.ro


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Thank

you!

dorica dan.7 years of apwr

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