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EURO-HSPGeneral Assembly and Annual Meeting

May 31 – June 1, 2015

Madrid, Spain

Euro-HSP - GA 2015 - May 31 / June 1 - Madrid, Spain

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General Assembly

• Annual report from the president (Dorthe) Activity report 2014 – 2015 Website www.eurohsp.eu. Webmaster???

• Facebook (Rob) https://www.facebook.com/groups/eurohsp/

• Online communities (Dorthe)www.rareconnect.org

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General Assembly

• Annual report from the treasurer (Marina)Report for 2014Budget for 2015 (including our GA in Madrid)

• Election of the Board of Directors (agreed on at GA 2014)

President (Dorthe accepts re-nomination for 2 years) Treasurer (Marina accepts re-

nomination for 2 years) Scientific advisor (Jean accepts re-nomination for 2 yrs. Extra members?

Vice-president / secretary in 2016.

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General Assembly

• Report from our scientific board (Jean)

• Report from conferences CEF meeting in Paris (Dorthe)EPF/CBHC conference in Tallinn, Estonia

(Dorthe)EPF/CBHC conference in Madrid, Spain (Fina)RBP conference in Rome, Italy (Jean)PAC/RD-Connect meeting in Palma, Mallorca

(Dorthe)EUPATI conference in Dublin, Ireland (Rob)EURORDIS GA and annual meeting, Madrid,

Spain

Euro-HSP - GA 2015 - May 31 / June 1 - Madrid, Spain

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CEF meeting

CEF: Council of European Rare Disease Federations

• The Council of European RD Federations is a link between EURORDIS and the members of the Federations.

• The Council of European RD Federations provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases.

Important topics: • Organization of Centres of Expertise and European Reference Networks by

Therapeutic Areas• The how and why of disease registers.

http://eurordis.org/content/european-disease-specific-federations

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EPF /CBHC Conference in Tallinn

EPF: European Patients´ ForumCBHC: Cross Border Health Care

All European countries have a national agency for Patient rights and complaints:• The agency provide general guidance on the rights to reimbursement of costs for

treatment received in another EU/EEA state.• The agency likewise provide general guidance to insured persons from other EU/EEA

states.• The patient advisers provide specific guidance for citizens, who want treatment abroad.• The patient advisers likewise provide specific guidance to insured people from other

EU/EEA states.http://www.eu-patient.eu/Events/Archived-Events/Cross-Border-Healthcare-Conference-6-8-October-Tallinn-Estonia/

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RD-Connect PAC 3rd annual meeting

RD-Connect: A unique global infrastructure project connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.

PAC: Patient Advisory Council http://rd-connect.eu/about/governance/pac/

Important:• The integrated platform will be operational mid-2015• The RD-Connect online searchable catalogue can be accessed at

www.catalogue.dk-connect.eu • Best practices for informed consent http://rd-connect.eu/platform/ethics/consent /•

http://rd-connect.eu/news/updates-from-the-2nd-rd-connect-and-neuromics-meeting-palma/

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General Assembly

• Strategic action plans for the future GA and annual meeting 2016 New members: enlargement of the federation• Funding: Pharma companies, Eurordis Grant,

Crowdfunding and Kickstarter • Other business

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Annual Meeting

• Points to learn from each other in the futureBest Practices Manual – why/why not (Fina)

• The International HSP meetingStatements from the national groups

• Evaluation of the GA and annual meeting

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Statements from the national groups

• What is the National purpose?• What business are HSP patient groups in?• What is the preferred future for people with HSP?• What does success look like?• Common interests: The values by which patient groups

work.• Future: Realistic collaborations and working

relationships