History

 

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


  • Action Plans
    GA 2018 in Vienna, Austria
    Project: HSP Best Practice Manual
    Enlargement of the Federation


Read more about the GA here

 

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

Read more from the GA here

 

Spring

The international logo is agreed on 

 

2015



May - Madrid, Spain

The 1st International HSP meeting takes place on June 1-2.

Read more about the meeting here


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

Read more from the GA here

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


Read more from the GA here

 

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

 

Read more from the GA here

 

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.

Read more from the GA here.

 

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, spe-cially devoted to clinical, genetics and/or daily management of affected patients, who speak on various hot-button topics related to HSP.

Read more from the meeting in Burgos, Spain.

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:

  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 members.
  3. Geir and Ingerid make a bank account parallel with Naspa's account.
  4. The Bylaws were approved.

Read more from the GA here.

 

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.

Parisbod2010
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:

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

Paris2010
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:

  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

  2. 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:

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

Read more about the meeting in Bordeaux.

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, founder of www.hsp-info.eu, 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.