Past events & meetings

Here you can find various documention of past meetings and events.



June 2016 - Paris, France
Euro-HSP 6th GA and annual meeting

June 2016 - Paris, France
- Jean, Hermien, Martin and Dorthe participate in SPATAX conference

May 2016 - Rome, Italy
- Marina and Giorgia arrange the 1st Italian awareness event "Potato Pants"

May 2016 - Edinburgh, UK
Dorthe participates in the 8th European Conference on Rare Diseases & Orphan Products, ECRD. Read more here.

February 2016 - Paris, France
- The French HSP association participates in the RareDiseaseDay event in Paris

February 2016 - Copenhagen, Denmark
- The Danish HSP association participates in the RareDiseaseDay event in Copenhagen and Århus


October 2015 - Paris
Dorthe participates in the 8th CEF workshop on "European Reference Networks - getting ready". The documents and presentations are available here.

May 2015 - Madrid, Spain
- Euro-HSP participate in the 1st Global HSP Group Leader Meeting. Read more here.

May 2015 - Madrid, Spain
- Euro-HSP 5th GA and annual meeting 

March 2015 - Madrid, Spain
- Fina participates in an EPF workshop on Cross Border Healthcare. Read more here

March 2015 - Palma, Mallorca, Spain
- Dorthe participates in the RD-Connect Stakeholders Conference and Annual Meeting. Read more here

February 2015 - Rome, Italy
- Jean participates in the Rare Best Practices international course on Health Care Guidelines on Rare Diseases. Quality Assessment. Read more here.


October 2014 - Paris, France
- Dorthe participates in the 7th workshop"Training on registries" of CEF in Paris. CEF is the Council of European Federations. 

October 2014 - Tallinn, Estonia
Dorthe participates in the Cross Border Healthcare Regional Conference arranged by EPF. EPF is European Patients´Forum.

September 2014 - Copenhagen, Denmark
- Euro-HSP 4th GA and annual meeting
- Euro-HSP participate in the Danish Walk´n Roll. See video here

April 2014 - Warsaw, Poland
Dorthe and Rob participate in the EUPATI workshop 2014: Reaching a Public Audience on Medicines Development. Read more here.


November 2013 - Denmark
- Theme day 2013: "Latest news about Ataxia and HSP". See the program and pictures here.

October 2013 - Paris, France
- Dorthe participates in the 6th workshop of CEF in Paris. CEF is the Council of European Federations

October 2013 - Brussels, Belgium
- Dorthe participates in the Stakeholders Conference of RD-Connect as a member of PAC on October 16-18 to identify and analyze some of the regulatory hurdles hampering research. PAC is the Patient Advisory Council of RD-Connect

October 2013 - Murcia, Spain
Fina participates in the 1st Ibero-American congress in Murcia on October 14-18 with national alliances from Latin America and

October 2013 - Randers, Denmark
- Dorthe meets with the web designers at to discuss our new website

October 2013
- Dorthe and Marina participate in the RareConnect Moderator Webinar on Crowdfunding on Oct. 9

September 2013
- Walk'n Roll 2013

June 2013 - London, England
- Dorthe participates in EFNA's patient workshops: Pharmaceutical Pricing, Access and Reimbursement.  EFNA is the European Federation of Neurological Associations

June 2013 - 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

June 2013 - Paris, France
- Euro-HSP 3rd GA and annual meeting


May 2012 - Paris, France
-Euro-HSP 2nd GA and annual meeting

February 2012
- Rare Disease Day

November 2011
- Danish Conference
- General Assembly, Milan, Italy

May 2011
- Burgos meeting
- Euro-HSP General Assembly, Burgos