spanish info service for rare disease - eurordis · vanesa pizarro ortiz social woker and project...

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