Activity report

GA 2013, agenda 1a.

 

Activity report 2012-2013

 

 

Meetings and conferences

 

2012

 

May - Paris, France

Euro-HSP 2nd  GA and annual meeting. Minutes of the GA will soon be at www.euroshp.eu.  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.   

 

August

Dorthe participates in the 3rd RareConnect Moderator Webinar: Quality of Life. Information and patient generated knowledge.

 

August - Frambu, Norway

Dorthe participates in a week´s HSP conference/course at Frambu, the Norwegian Center for rare diseases. www.frambu.no.

 

October - Paris, France

Dorthe participates in the 5th CEF workshop in Paris, France. Report at http://www.eurordis.org/content/council-european-rare-disease-federations-documents#Workshop%204

 

November - Gardermoen, Norway

Dorthe participates in NASPA`s annual meeting. Also Peter Barrefors from the Swedish Facebook group participates. www.regioner.nhf.no/index.asp?id=63905 

 

 

2013

January

Dorthe participates in the 5th RareConnect Moderator Webinar: New features of RareConnect. Slides in PDF: http://chilp.it/999360

February - Randers, Denmark

Dorthe meets with the web designers at www.freestylex.dk to get our new website www.eurohsp.eu. The 2 owners suffer from OI and ataxia and design websites part time.

 

March

Dorthe participates in PAC´s 1st webinar. PAC is the Patient Advisory Council of a newly launched European project called RD-Connect. www.rd-connect.eu

 

April - Dublin, Ireland

Dorthe participates in IRDiRC´s 1st conference as part of PAC. www.irdirc.org/?p=889

 

April - Rome, Italy

Fina participates in EUPATI´s conference. http://www.patientsacademy.eu/index.php/en/news/165-successful-eupati-2013-conference-eupati-a-vision-for-2020  

 

May - Dubrovnik, Croatia

Dorthe participates in EURORDIS membership meeting. Information about the meeting will be available at www.eurordis.org.  

 

 

Upcoming meetings and conferences

 

June - Paris, France

Euro-HSP 3rd GA and annual meeting.

 

June - Paris, France

Jean and Dorthe participate in SPATAX conference on HSP and Ataxia. SPATAX is the international Network of hereditary forms of SPAstic paraplegias and cerebellar ATAXias. www.spatax.wordpress.com/2012/11/16/inscription-spatax-meeting-2013/

 

June - London, England

Dorthe participates in EFNA´s patient workshops: Pharmaceutical Pricing, Access and Reimbursement.  EFNA is the European Federation of Neurological Associations. http://efna.net/european-patient-training-and-research-network-get-involved/

 

 

EURORDIS

 

Euro-HSP applied for a grant of ?3000 for our GA 2012 and got ? 2200.

Euro-HSP applied for a grant of ?2200 for our GA 2013 and got ? 2112.

 

 

Euro-HSP members

 

At the present Euro-HSP has 6 full members: Spain, France, Norway, Denmark, Italy and The Netherlands and 1 affiliated member: the Swedish Facebook group.

 

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.  This year we have contacted people in e.g. Germany, Finland, Switzerland and Ireland. Also at the various conferences we have made contacts with people from e.g. Rare Disease organizations and organizations for neuromuscular diseases.  We need to work further on that in the coming year. Perhaps one of our working tracks?

 

 

Euro-HSP history

 

The Euro-HSP history is being moved to our new website www.eurohsp.eu.

To be added:

 

2012

July

The Swedish HSP Facebook group becomes the 7th member of Euro-HSP.

 

August

Our former president and webmaster Fernando Gonzales dies from cancer on August 8 at the age of 70.

 

October

Jean, Ingerid and Dorthe meet in Paris, and Euro-HSP gets a bank account in Banque Agricole, Paris, on Oct. 30.

 

December

Rob Camp officially ends his moderator role at RareTogether.

 

2013

March

Our Scientific Board is established with Jean as the chairman.

 

 

Euro-HSP website

 

Euro-HSP is getting a new website www.eurohsp.eu. The web designers are Karina and Simon at www.freestylex.dk .The information from our former website is being moved and the new website will be launched in June/July. You can follow the development.

 

 

Scientific Board

 

In March our scientific board is launched with Jean as the chairman. The scientific board consists of 2 doctors from Denmark, 2 from Norway, 2 from France, 2 from Spain and 4 from Italy. We look forward to working with them.

 

 

Research

 

At the moment we´re playing an active role in rare disease research by our representation in the RD-project and we´re also looking for other ways of participating in research projects.

 

 

Fundraising

 

We now have a drug list which shows the prescriptions for HSP sufferers and the firms which produce the products. We have contacted Novartis for a grant but the firm declined our application.  It´s our plan to contact the other firms shortly and later ask for funding.

 

 

 

Dorthe

08.06.2013

 

Events