EURO-HSP General Assembly and Annual Meeting May 31 – June 1, 2015 Madrid, Spain Euro-HSP - GA May 31 / June 1 - Madrid, Spain 1

2 General Assembly Annual report from the president (Dorthe) Activity report 2014 – 2015 Website Webmaster??? Facebook (Rob) Online communities (Dorthe)

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 3 General Assembly Annual report from the treasurer (Marina) Report for 2014 Budget 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.

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 4 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 May 31 / June 1 - Madrid, Spain 5 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.

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 6 EPF /CBHC Conference in Tallinn EPF: European Patients´ Forum CBHC: 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. October-Tallinn-Estonia/

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 7 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 Important: The integrated platform will be operational mid-2015 The RD-Connect online searchable catalogue can be accessed at Best practices for informed consent / / palma/

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 8 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

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 9 Annual Meeting Points to learn from each other in the future Best Practices Manual – why/why not (Fina) The International HSP meeting Statements from the national groups Evaluation of the GA and annual meeting

Euro-HSP - GA May 31 / June 1 - Madrid, Spain 10 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