spanish info service for rare disease - eurordis · vanesa pizarro ortiz social woker and project...
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Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Spanish Info Service for Rare Disease
Vanesa Pizarro OrtizSocial Woker and Project Manager
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Support to patiens and
their families
Researchadvocacy
PoliticalAction
Awarenessand visibility
FEDER main actions
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Queries
Number of Queries Total
2001-2008
Queries Atended: 3.015
Actions by Technical : 3.585
Users Attended: 2.623
Number of Queries 2008
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Queries II
82%
18%TOTAL SPAINTOTAL OTHERS COUNTRIES
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Users Queriesothers countries 2008
23 24 24 33 39 45 60 81 83 84
166
284322
364
499
805
Estado
s Unid
osEl S
alvad
orPan
amá
Bolivia
Portug
alGua
temalaBras
ilCuba
Ecuado
rUrug
uay
Venez
uela
ChilePerú
Colombia
Mexico
Argenti
na
Estados UnidosEl SalvadorPanamáBoliviaPortugalGuatemalaBrasilCubaEcuadorUruguayVenezuelaChilePerúColombiaMexicoArgentina
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
The Answers
SIO 2001 – 2008
2094
7765
2968
7063
1633
352 1168
Contact to patiensDerivation to FEDER assotiationDerivation to general assotiationCentre derivationContact with profesionalSend informationOthers
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
SIO STAFF
STAFF1 coordinator5 social Workers2 psychologist3 administrative assistants
VOLUNTEERS2 doctors
TRAINING• Welcome MeetingAn Action Plan with the
working guidelines.A Data Base Management
Guide• Face to face Meeting
and Conference Call• Supervising
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
DATA BASE MAGNAGEMENT
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
ACTION PLAN
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
WORKING GUIDE LINES
In the contact• Empathy, respect and
precision• What worry them and
what they are asking for.• What do they think how
we can help them• Collect information, clarify
meanings, open new options.
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
WORKING GUIDE LINES
In the answer• Help to get out of the
isolation.• "Sharing experiences"• Build Networks• Get specific
references for Rare Diseases.
• Analyze the queries
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
WORKING GUIDE LINES
Technician as a resource themselves
• The intervention is a professional interview
• Looking for answers and open to new opinions.
• We are creating NETS.• Creating Mutual Help Groups• Psychological help
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
SIO COMPETENCES
– Information about diseases – Advice on existing resources (associations, institutions ...)
and specialists. – Provide that persons affected by the disease or group of disorders can
contact and exchange experiences. – We encourage the formation of GAM (Mutual Support Group). – We encourage the grouping of families and / or associations of people
affected in patients. – Provide psychological support. – Legal Advice. – Promoting Association
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Not SIO COMPETENCES
HIGHLIGHT WHAT INFORMATION IS SIO´s COMPETENCE
• Diagnosis, We referring them to a doctor specialized
• Prognosis We put two patients in touch and each patient has different progress
• Prescription of the treatment open a new help option
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Contacting affected
Forming support groups
Forming partnerships
Adhering to FEDER to these associations
Affected leading to existing partnerships that are part of the FEDER
SIO has grown and become stronger to FEDER
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
CALL MANAGMENT
• Reception • Open a File in the Data Base• Searches• Several contacts• Answer to the question• Contact • Follow up, if necessary• Classify files
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Project with affected and isolated people.Project with affected people without diagnosis.Identification of cases which are susceptible of legal advice Identification of cases which are difficult in order to access to medicine
Identification of specialists by pathologies and pathological groupsProject with communication’s department about disorders without reference
Association. To formalize a collaboration agreement FUNDACION GEISER (Rare Desease South
America)To formalize an agreement with ORPHANET.Constitution and formalization of the Advisory Committee of the SIO.
PROPOSALS 2009
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Listen, understand,
support, participate and act
Our role
THANK YOU !
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
Example of a Query
Identify. We hope to expose the reason for their callAsking what we need, always with great tact. It fills out the contact sheet.
- Name - Family affected ... - Where flame - Age - Name of the pathology - Which hospital have been diagnosed - Do you have disabilities?
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
• Find the name of the disease entities in the database to check if there is Association of reference,
• Should not have any information on the data base, or it´snot enough, go to the user base to find how many have consulted this pathology. If many subscribers there, which have filtered consulted in the past year and look to see what actions have been responded.
• Go to the Orphanet database, to view the information in it on pathology, and record everything that is relevant to the person, including data associations outside Spain, where they have been in Spain.
Example of a Query
Spanish Info Service for Rare Disease (SIO)Spanish Aliance for Rare Disease (FEDER)
• 5) If a person wants information about the disease, find documentation pages as Medline Plus, PubMed, Discapnet ... It is also interesting to see groups work of different scientific societies.
•6) If you need information about social resources, and have not, go to entities that may facilitate this response.
•7) When the person sought contact with others affected, search the database a similar profile. We can always offer this option when we are not Association has specific.
Example of a Query