History
Euro-HSP in a Nutshell
EURO-HSP – the Federation of European HSP-Associations – aims for providing a strong voice for all people being affected by Hereditary Spastic Paraplegias (HSPs). Over 50.000 patients together with their close relatives, partners and friends deal with the burden of a progressing, neurodegenerative spastic gait impairment in all countries in entire Europe. Everywhere, we all want to get cured.
Founded in 2010 and growing: The EURODIS project “Rare! Together” triggered the foundation of Euro-HSP in June 2010 by six national associations: Denmark, France, Italy, Norway, Spain and the UK. The Euro-HSP Statute got registered in Paris, France. Since then, Austria, Germany, the Netherlands, Sweden, and Switzerland joined the Euro-HSP community.
Living international cooperation on multiple levels: A basic need is social interaction and public positioning of a disease which many people hardly can pronounce. Associations exchange experience for learning from each other, define needs for enhancing Quality-of-Live, rehabilitation and for raising awareness. Social media are used positively for motivating companions of fate around the planet and for gaining the resources we need for finding a cure. We are stronger together.
In close cooperation with the Tom-Wahlig-Foundation Euro-HSP donated the annual Adolf-Struempell-Prize for motivating early career researchers from all over the world to translate basic research into cure. For bridging the gap between basic research, industry, and clinical management Euro-HSP started the euroSPG4 project in 2023. It provides coordinated support by multiple European and US-partners for the important research with the lab but also for the translation of findings to the people. We plan for extending these activities for making our vision come true: We want to get cured.
We are proud that we continuously managed to extend our network for working together with friends and partners all over the globe.
Below you find a record of meetings.
Euro-HSP GA 2024
Date: 2024-02-25
Euro-HSP GA 2023
Date: 2023-02-26
Euro-HSP GA 2022
Date: 2022-02-08
Euro-HSP GA 2019
Date: 2019-06-15
Venue: Klostenneuburg International School, Buchbergasse, 31 Klostenneburg, Vienna, Austria
Euro-HSP Annual meeting 2019
Treasurer´s report
Jean´s reports
2018
December - via SKYPE
8th General Assembly
- Election of the Board of Directors
President: Marina Zapparoli, Italy
Vice-president: Hermien Remmelink, Netherlands
Secretary: ?
Treasurer: Martin Ott, Switzerland
Scientific Advisor: Jean Bénard, France
Member of the BoD: ?
- Action Plans: ?
2017
June - Alghero, Sardinia, Italy
7th General Assembly and annual meeting
- Election of the Board of Directors
President: Marina Zapparoli, Italy
Vice-president: Hermien Remmelink, Netherlands
Secretary: Ingerid Ringheim, Norway
Treasurer: Martin Ott, Switzerland
Scientific Advisor: Jean Bénard, France
Member of the BoD: ?
- Action Plans
GA 2018 in Vienna, Austria
Project: HSP Best Practice Manual
Enlargement of the Federation
May
HSP Support Group (UK) joins Euro-HSP
2016
June - Paris, France
6th General Assembly and annual meeting
- Election of the Board of Directors
President: Dorthe Lykke, Denmark
Vice-president: Marina Zapparoli, Italy
Treasurer: Martin Ott, Switzerland
Secretary: Hermien Remmelink, Netherlands
Scientific Advisor: Jean Bénard, France
Member of the BoD: Ingerid Ringheim
- Action Plans
GA 2017 in Sardinia, Italy
Project: HSP Best Practice Manual
Enlargement of the Federation
Spring
The international logo is agreed on
2015
May - Madrid, Spain
The 1st International HSP meeting takes place on June 1-2.
May - Madrid, Spain
5th General Assembly and annual meeting
- Election of the Board of Directors
President: Dorthe Lykke, Denmark
Vice-president and treasurer: Marina Zapparoli, Italy
Secretary: Ingerid Ringheim, Norway
Scientific Advisor: Jean Bénard, France
Member of the BoD: Hermien Remmelink, Netherlands
- Action Plans
GA 2016 in Paris, France to be investigated
Projects: Patient Registries and HSP Best Practice
Enlargement of the Federation
2014
September - Copenhagen, Denmark
4th General Assembly and annual meeting
- Election of the Board of Directors
President: Dorthe Lykke, Denmark
Vice-president: Fina Mateo, Spain
Treasurer: Marina Zapparoli, Italy
Secretary: Ingerid Ringheim, Norway
Scientific Advisor: Jean Bénard, France
- Action Plans
GA 2015 in Madrid, Spain will be investigated
Enlargement of the Federation
Fundraising
Creating a brochure on Best Practices
February
Switzerland becomes a full member of Euro-HSP
January
Our new website is launched: www.eurohsp.eu
2013
October
Euro-HSP goes on Facebook: https://www.facebook.com/groups/eurohsp
June - Paris, France
3rd General Assembly and annual meeting
- Election of the Board of Directors
President: Dorthe Lykke, Denmark
Vice-president: Fina Mateo, Spain
Treasurer: Marina Zapparoli, Italy (1 year)
Secretary: Ingerid Ringheim, Norway (1 year)
Scientific advisor: Jean Bénard, France
- Strategic action plans
Conference and GA 2014 - Copenhagen will be investigated
Enlargement of the Federation to all European countries
Fundraising: crowd-funding will be investigated
March
Our Scientific Board is established 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.
2012
October
Jean, Ingerid and Dorthe meet in Paris, and Euro-HSP gets a bank account in Banque Agricole, Paris, on October 30.
August
Our former president and webmaster Fernando Gonzales dies from cancer on August 8 at the age of 70.
July
Swedish HSP Facebook group becomes affiliated member of Euro-HSP
May - Paris, France
2nd General Assembly
- Election of Board of Directors
President: Dorthe Lykke, Denmark
Vice-president: Fina Mateo, Spain
Treasurer: Ingerid Ringheim, Norway
Secretary: Marina Zapparoli, Italy
Scientific advisor: Jean Bénard, France
- Strategic action plans
Extending the federation to other European countries
Preparing the next GA - possibly in connection with the ECRD in Dubrovnik
Preparing a conference in 2014 - possibly at Frambu, Norway, or in Denmark
Involvement in European Grant Calls
Decisions:
1. The annual fee to be? 150 per member association but membership fees can be reduced by the BoD.
2. To lay out an action plan/strategic plan with 3-5 points that we would like to do in the next 2-5 years
3. Jean to make a bank account in Paris. Marina, Rob and Fina will investigate in Italy and Spain.
The Euro-HSP representatives participate in the celebration of the French HSP association's 20th anniversary.
February
Euro-HSP gets its logo designed by a Danish person with HSP, a graphic designer and Olympic trike-rider Alan Schmidt.
2011
November
Euro-HSP becomes a member of Eurordis.
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, specially devoted to clinical, genetics and/or daily management of affected patients, who speak on various hot-button topics related to HSP.
1st General Assembly
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.
- 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
- Strategic action plans:
Extending the federation to other European countries.
Preparing the next GA and conference agenda.
Decisions:
- The conference and GA of 2012 to take place at Frambu, Norway.
- The annual fee to be? 150 per member association to be approved by the members.
- Geir and Ingerid make a bank account parallel with Naspa's account.
- The Bylaws were approved.
2010
November
The Dutch group contacts Euro-HSP and says they are interested in joining.
Now 7 countries are involved.
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 Bylaws, membership of Eurordis, new members, annual fees, bank account and the first conference and GA to take place in Burgos, Spain in 2011.
Fernando (Spain), Jean (France), Tomas (Italy), Marina (Italy), Dorthe (Denmark), Jean Lois (France), Ingerid (Norway) and Rob (EURORDIS)
July
The Euro-HSP Statutes are registered in Paris, France.
Fernando Gonzales (Spain) launches the Euro-HSP.
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.
Decisions:
- The Statutes are approved.
- Jean writes the proposal to Eurordis for a Grant for our GA 2011.
Jean (France), Fina (Spain), Jean Louis (France), Dorthe (Denmark), Marina (Italy) and Rob (EURORDIS)
January
Italy joins Euro-HSP with Marina Zapparoli as representative.
Now 6 members: Spain, France, Italy, Norway, UK and Denmark.
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.
Decisions:
- 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
- Registration of the federation is decided to be in France
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.
Decisions:
- Name: Euro-HSP.
- Registration of the federation to be in France or Belgium.
- Members: Spain, France, Norway, Denmark and UK.
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 Federations.
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) have 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.
2008
December
Fernando Gonzalez (HSP Spain) is contacted by Philippe Hanriat (HSP France) 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.
September
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 decides to leave the project and Eurordis reevaluated the project.
2007
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.