Activity report

GA 2012, agenda 1a.

 

Activity report 2011-2012

 

 

Meetings and conferences

 

2011

May - Amsterdam, Holland

Dorthe participates in Eurordis membership meeting.

 

May - Burgos, Spain

Euro-HSP conference and 1st GA. Minutes of the GA at https://sites.google.com/site/eurohsp/general-assembly-2011 and the Conference at https://sites.google.com/site/eurohsp/burgos-meeting-may-2011

 

June - Barcelona, Spain

Dorthe participates in Eurordis Summer School for patient advocates in clinical trials and drug development. Please see http://www.eurordis.org/training-resources and think about applying for next year!

 

June - Paris, France

Dorthe participates in the 4th CEF workshop in Paris, France. Report at http://www.eurordis.org/content/council-european-rare-disease-federations-documents#Workshop%204

 

October - Barcelona, Spain

Dorthe and Fina participate in the RareConnect workshop for moderators in Barcelona, Spain http://www.eurordis.org/content/rareconnect-online-rare-disease-communities We have the opportunity to start a webpage with almost-simultaneous translations through this program to accompany what we already have.

 

 

2012

March - Copenhagen, Denmark

Dorthe participates in the DIA (drug information association) 3 days conference in Copenhagen. www.diahome.org

 

 

May - Brussels, Belgium

Dorthe participates in Eurordis membership meeting in Brussels, Belgium. The meeting now and in the future will be in conjunction with DIA and their Rare Disease meeting. http://www.rare-diseases.eu/2012/index.php

 

May - Paris, France

Euro-HSP 2nd GA

The representatives participate in the celebration of HSP France - 20th anniversary.

 

May/June - Reykjavik, Iceland

Dorthe participates in the 2nd Nordic Conference on Rare Diseases. www.greining.is

 

 

EURORDIS

 

Euro-HSP became a full member of Eurordis in November 2011.

Euro-HSP applied for and got a grant of ?5000 for our conference and GA 2011.

Euro-HSP applied for and got a grant of ?3000 for our GA 2012.

 

 

Euro-HSP members

 

At the present Euro-HSP has 6 members: Spain, France, Norway, Denmark, Italy and The Netherlands.

During the past year we have contacted individuals, organizations and institutions in various European countries trying to get in contact with HSP people and get new members. Fina has contacted people in Portugal, Marina has contacted people in Germany, Switzerland and Greece, Ingerid has contacted people in Iceland (Dorthe will be in Iceland in May/June), Jean has contacted people in Belgium and Dorthe has contacted people in Sweden, Finland, Estonia, Lithuania and Latvia. So far we've had no luck. We need to work further on that in the coming year. Perhaps one of our working tracks?

 

 

Euro-HSP history

 

Dorthe and Fernando have written and publicised "A brief history of Euro-HSP" on the website. https://sites.google.com/site/eurohsp/

 

Euro-HSP logo

 

Euro-HSP has got a logo - designed by a Danish person with HSP, a graphic designer and Olympic trike-rider Alan Schmidt.

 

 

Research

 

In October 2011 Euro-HSP nominated dr. Sobrido, Spain, for a Eurordis Science Award. (Fina)

 

In March 2012 Euro-HSP became a collaborating partner of a research project EUROSPATAX.NET conducted by Dr. Sobrido, Spain. The proposal title is "Building integrative tools for cooperative research, healthcare and education on ataxias and HSP". One of the reasons we could not become an associated partner was that we could not provide a bank account, a budget and profile descriptions. We´ll work on that in order to be prepared for another chance.

 

Jean also has scientific proposals for us to hopefully work on in 2012 and the future (see attached document A).

 

 

Fundraising

 

We now have a drug list which shows the prescriptions for HSP sufferers and the firms which produce the products. It´s our plan to contact the firms shortly and later ask for funding.

(see attached document B)

 

Dorthe

16.05.2012

 

Events