1. 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 – Alghero, Sardinia

2. 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 – Alghero, Sardinia

3. 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 – Alghero, Sardinia

4. 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 – Alghero, Sardinia

5. 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 – Alghero, Sardinia

6. 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
Euro-HSP - GA 2017 – June – Alghero, Sardinia

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

8. 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:
RD-Connect video:
Euro-HSP - GA 2017 – June – Alghero, Sardinia

9. 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 – Alghero, Sardinia

10. 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 – Alghero, Sardinia

11. 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 – Alghero, Sardinia

12. 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 – Alghero, Sardinia