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General Assembly and Annual Meeting June 25 – 26, 2016 Paris, France

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Presentation on theme: "General Assembly and Annual Meeting June 25 – 26, 2016 Paris, France"— Presentation transcript:

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


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