Report of the First EURO HSP conference and General Assembly
Following two preparatory meetings in Paris (July and October 2010), the 1st European Conference on Hereditary Spastic Paraplegia (HSP) was held in the National Rare Diseases Center, CREER, in Burgos, Spain from the 27th May until the 30th May 2011.
Under the auspices of the Spanish Ministry of Health and the European Rare Disease Network EURORDIS and organized by the National Spanish HSP Association (Francisco Rodríguez Galván, firstname.lastname@example.org, President, and Fernando González), this meeting was devoted to clinical presentations of HSP disease, its genetics as well as quality of life of HSP-affected persons. Following a two-day Conference, the 1st General Assembly of EURO-HSP was held.
Paresis and spasticity of the lower limbs are clinical hallmarks of this group of neurological diseases subsequent to the mutation of one gene among 20 identified so far (there is ongoing research on some 20 additional chromosomal loci).
Renowned European speakers specifically devoted to clinical, genetics and/or daily management of affected patients spoke on various hot-button topics related to HSP disease:
- clinical heterogeneity,
- state-of-the-art in genetic diagnosis,
- current issues regarding patient-centred data registries at both National and European levels,
- pharmacological and surgical treatments,
- physical rehabilitation therapies including classical and more "unconventional" options like acupuncture, Chi Kung, Bobath, Perfetti and Vojta therapies
- adapted sports for adults and children,
- psychological behaviours of patients and care-givers coping with HSP
For a complete program overview, please see the page about Burgos Meeting May 2011
A visit to CREER in Burgos (Miguel Angel Carabias, Director) enables participants to envision a Center fully devoted patients and families affected by rare diseases.
The aims of this Center are:
- to promote development, innovation and optimization of resources for people with rare diseases,
- to give support and specialized services as a reference point of the public Administration, private Administrations involved in health care and the social involvement of people with rare diseases and their families,
- to offer families, care-givers and persons with rare diseases, guidance and support services, information and care training services, intensive rehabilitation services as well as lodging for patients and families.
EURO HSP General Assembly (GA) & Board Election
Finally the GA of the five National Associations that founded EURO-HSP (Denmark, France, Italy, Norway and Spain) elected the EURO-HSP Board (BoD) including a representative of each country:
- Dorthe Lykke (Danish HSP Association), President
- Fina Mateo (AEPEF, the Spanish HSP Association), Vice president
- Marina Zapparoli Manzoni (A.I. Vi.P.S., the Italian HSP Association), Secretary
- Ingerid Ringheim (the Norwegian HSP Association), Treasurer
- Jean Bénard (ASL-HSP, the French association), Scientific Advisor
The 5-year working plan of the Board is ongoing with the following current WP:
WP1: Extending the Federation to other European countries
WP2: Preparing the next General Assembly and Conference Agenda that will be held in spring 2012 at Frambu, Norway, in collaboration with Denmark.
The EURO-HSP BoD is indebted to Fernando Gonzalez (from the Spanish HSP Association) for having chaired the temporary BoD during 2010 to prepare this first GA in Burgos and to have definitively launched EURO-HSP.
Warm thanks also go to Rob Camp, EURORDIS, who boosted the group's actions enabling the creation of EURO-HSP and who still remains besides the Board for coordinating current and ongoing efforts of the Federation.
Click here to see more about the Conference Program