1. General Assembly and Annual Meeting June 25 – 26, 2016 Paris, France
Euro-HSP
General Assembly and Annual Meeting
June 25 – 26, 2016
Paris, France
Euro-HSP - GA 2016 – June 25 – Paris, France

2. Euro-HSP - GA 2016 – June 25-26 – Paris, Francen
General Assembly
Annual report from the president (Dorthe)
Activity report 2015 – 2016
Website Webmaster???
Annual report from the treasurer (Marina)
Report for 2015
Budget for 2016
Euro-HSP - GA 2016 – June – Paris, Francen

3. Euro-HSP - GA 2016 – June 25-26 – Paris, France
General Assembly
Election 1: Member to the Board (for 2 years)
The Board recommends Martin
Election 2: Board of Directors
Vice-president (Marina accepts re-nomination for 2 years)
Treasurer (for 1 year) The BoD recommends Martin.
Secretary (for 2 years) The BoD recommends Hermien
Euro-HSP - GA 2016 – June – Paris, France

4. Euro-HSP - GA 2016 - June 25-26 – Paris, France
General Assembly
Report from our scientific board (Jean)
Report from conferences
CEF meeting in Paris (Dorthe)
ECRD conference in Edinburgh (Dorthe)
Euro-HSP - GA June – Paris, France

5. 8th 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:
ERN – European Reference Networks
The new RareConnect
RareBestPractices
Eurordis Membership Criteria
Euro-HSP - GA 2016 – June – Paris, France

6. Euro-HSP - GA 2016 – June 25-26 – Paris, France

7. Euro-HSP - GA 2016 – June 25-26 – Paris, France
General Assembly
HSP Best Practices Manual
Points to be discussed (Dorthe)
Discussion paper (Jean)
Discussion paper (Martin)
Discussion paper (Hermien)
Euro-HSP - GA 2016 – June – Paris, France

8. Euro-HSP - GA 2016 – June 25-26 – Paris, France
General Assembly
Strategic action plans for the future
GA and annual meeting 2017
New members: enlargement of the federation
Funding: Pharma companies, Eurordis Grant,
Other business
Euro-HSP - GA 2016 – June – Paris, France

9. Euro-HSP - GA 2016 – June 25-26 – Paris, France
Annual Meeting
Reports from the national associations
Updating the info sheet
Updating the drug list
Potato Pants events
Workshop: HSP Best Practices Manual
Reimbursement forms (Dorthe)
Evaluation of the GA and annual meeting
Euro-HSP - GA 2016 – June – Paris, France

10. DRUG LIST Drug / aid Firm Countries Price Sirdalud Retard (Tizandine)
Novartis
DK, E, I, NL, CH
Baclofen (Liorésal)
DK, E, I, N, F, USA, NL, CH
Baclofen pump
Medtronic
DK, E, I, N, NL
Botox (botulinum toxin) injections in the legs
Allergan, Biopharm Ltd., Solstice Neurosciences, Merz Pharma
Electrical stimulation (walkaid)
Innovative Neurotronics
E, N, NL
3000€/leg (own cost)
Garbapentin/neurontin
Pfizer NL
Botox injections in the bladder ?
DK, N, NL
Lysanxia
(Prazepam)(benzostiazépine)
Euro-HSP - GA September 12, Copenhagen, Denmark

11. Euro-HSP - GA 2014 - September 12, 2014 - Copenhagen, Denmark
Drug / aid
Firm
Countries
Price
Detrusitol Retard
Pfizer
DK, N, NL
Kentera
Nicobrand
Tegretol (carbamazepine)
Novartis
N, NL
Kinin
Takeda Pharma
Dantrolene
Dantrolen/Impax
I, USA, NL
Myonal/Eperisone hydrochloride ? I
Betmiga (mirabegron)
Astellas Pharma Europe B.V.
Lyrica
DK, NL
Vesicare
Toviaz
Emselex
Merus Labs
Levodopum/Benserazid CH
Dronabinol
Euro-HSP - GA September 12, Copenhagen, Denmark