Euro-HSP - GA 2017 – June 17 – 18 - Alghero, Sardinia General Assembly and Annual Meeting June 17 – 18, 2017 Alghero, Sardinia, Italy Euro-HSP - GA 2017 – June 17 – 18 - Alghero, Sardinia

Euro-HSP - GA 2017– June 17-18 – Alghero, Sardinia Annual Meeting Welcome and introductions Reports from the national associations Presentations: Professor Stefano Sotgiu: Sardinia and HSP Professor Carlo Casali: ”Daisy”, Italian HSP database Coffee break Euro-HSP - GA 2017– June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017– June 17-18 – Alghero, Sardinia Annual Meeting Presentations: Lori Renna Linton: Potato Pants Event Dottor Panza: Mutation in gene ALDH18A1 causing SPG9A Hermien Remmelink: Eurordis Summer School 2017 Lunch Euro-HSP - GA 2017– June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia General Assembly Welcome Annual report from the president (Dorthe) Activity report 2015 – 2016 Annual report from the treasurer (Martin) Report for 2016 Budget for 2017 Report from our scientific board (Jean) Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia General Assembly Reports from conferences: SPATAX in Paris, France (Jean) CEF meeting in Paris, France (Dorthe) RD-Connect/PAC meeting in Berlin, Germany (Dorthe) EURORDIS membership meeting in Budapest, Hungary (Dorthe) Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

9th CEF workshop 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: European Reference Networks (ERN) The importance of CEF Genome editing http://eurordis.org/content/european-disease-specific-federations Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

RD-Connect annual meeting NeurOmics: a research project investigating in HSP RD-Connect: a global research and infrastructure resource PAC: Patient Advisory Council Interesting topics: Strategies for sustaining the project outputs beyond the EU funding period The involvement of PAC Presentations: http://rd-connect.eu/events/annual-meeting-berlin-2017/ RD-Connect video: https://www.youtube.com/watch?v=i0C03vpGhDM&feature=youtu.be Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

EURORDIS EMM 2017- Eurordis Membership Meeting General Assembly Conference Interesting sessions: 20 years of Achievements in the Rare Disease Community Hope and Happiness are part of the treatment Survival kit for small patient organizations Presentations: Posters: Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia General Assembly Elections: Board of Directors President (2 years) The BoD recommends Marina Vice-president (1 year) The Board recommends Hermien Treasurer (2 years) Martin accepts re-nomination Secretary (1 year) Scientific Advisor (2 years) Jean accepts re-nomination Vacant seat (2 years) Election: Webmaster Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia General Assembly Strategic action plans for the future The importance of a realistic action plan (Rob) HSP Best Practices Manual Jean Hermien GA and annual meeting 2018 New members: enlargement of the federation Funding: Pharma companies, Eurordis Grant, Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia

Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia General Assembly The use of logos. Questions from Frank (Dorthe) Other business Evaluation of GA and annual meeting Euro-HSP - GA 2017 – June 17-18 – Alghero, Sardinia