Spanish Info Service for Rare Disease

Transcription

1 Spanish Info Service for Rare Disease Vanesa Pizarro Ortiz Social Woker and Project Manager

2 FEDER main actions Political Action Awareness and visibility Research advocacy Support to patiens and their families

3 Queries Number of Queries Total Number of Queries 2008 Queries Atended: Actions by Technical : Users Attended: 2.623

4 Queries II 18% TOTAL SPAIN TOTAL OTHERS COUNTRIES 82%

5 Users Queries others countries Estados Unidos El Salvador Panamá Bolivia 499 Portugal Guatemala Brasil Cuba Estados Unidos El Salvador Panamá Bolivia Portugal Guatemala Brasil Cuba Ecuador Uruguay Venezuela 166 Chile Perú Colombia Mexico Argentina Ecuador Uruguay Venezuela Chile Perú Colombia Mexico Argentina

6 The Answers SIO Contact to patiens Derivation to FEDER assotiation Derivation to general assotiation Centre derivation Contact with profesional Send information Others

7 SIO STAFF STAFF 1 coordinator 5 social Workers 2 psychologist 3 administrative assistants VOLUNTEERS 2 doctors TRAINING Welcome Meeting An Action Plan with the working guidelines. A Data Base Management Guide Face to face Meeting and Conference Call Supervising

8 DATA BASE MAGNAGEMENT

9 ACTION PLAN

10 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.

11 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

12 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

13 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

14 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

15 SIO has grown and become stronger to 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

16 CALL MANAGMENT Reception Open a File in the Data Base Searches Several contacts Answer to the question Contact Follow up, if necessary Classify files

17 PROPOSALS 2009 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 groups Project 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.

18 Our role Listen, understand, support, participate and act THANK YOU!

19 Example of a Query Identify. We hope to expose the reason for their call Asking 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?

20 Example of a Query 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 s not 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.

21 Example of a Query 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.