Euro-HSP history

GA 2012, agenda 1b.


A brief history of Euro-HSP



Madrid, Spain

At a meeting in Madrid Rudi Kleinsorge (HSP Germany) proposes to Ian Bennet (HSP UK), Philippe Hanriat (HSP France) and Paco Rodriguez (HSP Spain) to participate in the Eurordis project Rare!Together and all agree. The aim of the project is to create European Federations of Rare Diseases.




The group called "Hereditary Spastic Paraparesis Support Group Europe" is selected for the Rare!Together project. The group is formed by Germany (Rudi Kleinsorge), UK (Ian Bennet), France (Philippe Hanriat), Norway (Ingerid Ringheim), Denmark (Dorthe Lykke), Iceland (Sigurdur H. Pétursson) and Spain (Fernando Gonzalez). The HSP representative to Eurordis is Rudolf Kleinsorge (HSPSGE) and the steering commit-tee is composed by John Dart (DeBRA Europe), Ute Wallentin (OIFE) and Karleen de Rijke (CFE). Rob Camp from Eurordis is designated as Project Mentor.


Rudi Kleinsorge, founder of , decides to leave the project and Euror-dis re-evaluated the project.



Fernando Gonzalez (HSP Spain) is contacted by Philippe Hanriat (HSP Spain) and asked to continue the project and he agrees if Dorthe Lykke (HSP Denmark) - proposed by Rudy Kleinsorge - will also continue. All the national associations are asked if they want to continue and France, Denmark, Norway, UK and Spain agree to do so. All associations but HSP UK designate their representatives.



February - Paris, France

Eurordis arranges the first formal meeting of Rare!Together project in Paris. The steering committee, composed by Ute Wallentin (OIFE), John Dart (DeBRA) and Karleen De Rijcke (CFE) present their agreement on the need for European Fede-rations.

Present: Fernando Gonzalez (HSP Spain) and Maria Escudero (ECHDO Spain), the two patient groups to be mentored.


The night before Jean Benard (HSP France), Fernando Gonzalez (HSP Spain) and Rob Camp (mentor) has a first meeting. The Spanish group, under the guidance of Paco Rodriguez (HSP Spain) shows a strong commitment to the project, as does the French group.


April - Bordeaux, France

The national representatives are invited to a meeting in Bordeaux as guests of the French HSP association.

Present: Fernando Gonzales (Spain), Jean Louis Nogeira (France), Dorthe Lykke (Denmark) and Rob Camp (mentor).

They start working on the Statutes and plan which countries to contact to find new members.


  1. Name: Euro-HSP
  2. Registration of the federation to be in France or Belgium
  3. Members: Spain, France, Norway, Denmark and UK




Rob, Fernando, Dorthe, Jean Louis

Link: Bordeaux 2009






June - Barcelona, Spain

The Euro-HSP representatives are invited to Barcelona in connection with a Rare! Together Network Workshop.

Present:  Fernando Gonzalez (Spain), Jean Benard (France), Ingerid Ringheim (Nor-way), Dorthe Lykke (Denmark) and Rob Camp (mentor).

They discuss the Statutes (French and English) and start working on the Bylaws.


  1. Election of the temporary Board of Directors

President: Fernando Gonzalez                Spain

Vice-president: Dorthe Lykke               Denmark

Treasurer: Ingerid Ringheim                                  Norway

Secretary: Jean Benard and Jean Louis Nogeira (both from French HSP)

  1. Registration of the federation is decided to be in France




Jean, Ingerid, Dorthe, Fernando

Link: Barcelona 2009







Italy joins Euro-HSP with Marina Zapparoli as representative.

Now 6 members: Spain, France, Italy, Norway, UK and Denmark.





June - Paris, France

The Euro-HSP representatives are invited to Paris to prepare for the GA in Burgos, Spain in 2011.

Present: Fina Mateo (Spain)  representing Fernando, Jean Benard and Jean Louis Nogeira (France), Marina and Amelio Zapparoli (Italy) , Dorthe Lykke (Denmark) and Rob Camp (mentor).

They discuss the Statutes and By-laws, finding new members, funding and a confe-rence and GA in 2011 to be held in Burgos, Spain.



  1. The Statutes are approved.
  2. Jean writes the proposal to Eurordis for a Grant for our GA 2011.



Jean, Fina, Jean Louis, Dorthe, Marina, Rob

Link: Paris June 2010





The Euro-HSP Statutes are registered in Paris, France

Fernando Gonzales (Spain) launches the Euro-HSP website:



October -  Paris, France

The Euro-HSP representatives are invited to Paris to finalize the preparation of the conference and GA.

Present: Fernando Gonzalez (Spain), Jean Benard and Jean Louis Nogeira (France), Ingerid Ringheim (Norway), Marina and Amelio Zapparoli (Italy), Dorthe Lykke (Den-mark) and Rob Camp (mentor).

They discuss By-laws, membership of Eurordis, new members, annual fees, bank ac-count and the first conference and GA to take place in Burgos, Spain in 2011.



Fernando, Jean, Amelio, Marina, Dorthe, Jean Louis, Ingerid, Rob


Link: Paris October 2010




The Dutch group contacts Euro-HSP and says they are interested in joining.

Now 7 countries are involved.





May - Burgos, Spain

Euro-HSP has its first conference "HSP patients need to be heard - the voice of rare diseases in Brussels" at CREER, the National Rare Diseases Center in Burgos, Spain.


The conference is a great success with many prominent speakers from Europe, spe-cially devoted to clinical, genetics and/or daily management of affected patients, who speak on various hot-button topics related to HSP.








1st GA

Present: Fernando Gonzales, Paco Rodrigues and Fina Mateov(Spain), Jean Benard (France), Ingerid Ringheim, Grete Grundvig and Geir Eriksen (Norway), Marina and Amelio Zapparoli (Italy), Dorthe Lykke and Diana Holm (Denmark) and Rob Camp (mentor). The Netherlands and UK are not present.

  1. Election of the Board of Directors

President: Dorthe Lykke                       Denmark

Vice-president: Fina Mateo                   Spain

Treasurer: Ingerid Ringheim                                  Norway

Secretary: Marina Zapparoli                                   Italy

Scientific advisor: Jéan Benard             France

Webmaster: Fernando Gonzalez            Spain

  1. Strategic action plans

Extending the federation to other European countries

Preparing the next GA and conference agenda



  1. The conference and GA of 2012 to take place at Frambu, Norway
  2. The annual fee to be ?150 per member association to be approved by the mem-bers
  3. Geir and Ingerid make a bank account parallel with Naspa-s account
  4. The By-laws were approved




Rob, Ingerid, Dorthe, Jean, Fina, Marina

Link: Burgos GA 2011





Euro-HSP becomes a member of Eurordis




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






May - Paris, France

The Euro-HSP representatives are invited to celebrate the French HSP association-s 20th birthday.


2nd GA:







PS. Fernando is preparing "real" links on the website.