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SPANISH ASSOCIATION OF ATAXIA PATIENTS FEDAES

SPANISH ASSOCIATION OF ATAXIA PATIENTS FEDAES. In 1998, we generated the e- mailing list of Hispataxia and the webpage . In 2000, we contacted researchers in Spain and abroad interested in ataxia research .

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SPANISH ASSOCIATION OF ATAXIA PATIENTS FEDAES

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  1. SPANISH ASSOCIATION OF ATAXIA PATIENTSFEDAES • In 1998, wegeneratedthe e-mailinglist of Hispataxia and thewebpage. • In 2000, wecontactedresearchers in Spain and abroadinterested in ataxia research. • In 2001, theSpanishAssociation of ataxia patients FEDAES wasestablishedfromthe e-mailinglistHispataxia. • FEDAES isincluded in EUROATAXIA, FEDER and EURORDIS. • Goals: promote ataxia research and improvethelifequality of patientswith ataxia.

  2. ACTIVITIES SUPPORTING RESEARCH (I) • Steps for fabricating and obtaining recombinant IGF1 and established a clinical assay with IGF1 (La Paz Hospital, Madrid). • Contribution with patients to clinical trials with idebenone. • Elaboration and publication of booklets disseminating clinical and scientific information to patients. • Provide information about public and private research calls to scientists.

  3. ACTIVITIES SUPPORTING RESEARCH (II) • Support to scientists working on ataxias in Spain and abroad in order to obtain funding from public and private agencies: Spanish Ministry of Health, Spanish Ministry of Science and Innovation, ICO Funds, La Caixa, European Commission (FP6: EUROSCA, and FP7), etc. • Support to scientists using innovative therapeutic approaches such as gene and cellular therapies. • Support to clinical researchers working on different aspects of ataxia: clinical trials, genetics, physiotherapy, psychology, etc.

  4. ACTIVITIES SUPPORTING RESEARCH (III) • We strongly support research with embryonic and somatic stem cells in Spain. • We promote research with the following drugs: • Idebenone • Growth Hormone • Riboflavine • Deferriprone • EPO • IGF1 • Phosphatil-B (multivitaminic and phospholipidis complex)

  5. ACTIVITIES SUPPORTING RESEARCH (IV) • On several occasions, we have proposed candidates of Spanish researchers to different awards such as Lilly Foundation, Prince Felipe, Queen Sophia, March Foundation, Albert Sols, etc. • Contributions to several regulatory and technical documents such as the Modelosociosanitarioespañol, Ley de calidad, Cartera de servicios del SNS. • Active members of the Ethical Committee of the Institute for Rare Disorders.

  6. ACTIVITIES SUPPORTING RESEARCH (V) • Active members of Board of Directors of FEDER contributing to the elaboration of Spanish and European regulatory and technical documents. • Participation in the elaboration of the Spanish National Plan of Rare Disorders. Coordination of the groups working on therapies for Rare Diseases.

  7. Organisation of Meetings for Clinical and Basic Researchers: January 2001. Gregorio Marañón Hospital, Madrid. June 2004. La Paz Hospital, Madrid. May 2008. National School of Health, Madrid. Organisation of Annual Workshops (Jornadas) with patients and scientists. ACTIVITIES SUPPORTING RESEARCH (VI)

  8. ACTIVITIES SUPPORTING RESEARCH (VII) About FP7: • First meeting in Hospital La Paz, Madrid. May 2006. • The first call explicitly excludes funding of rare neurological disorders. So in order to lobby ataxia research: • Meeting with Octavi Quintana DG of Health, EC. • Letters from Euroataxia members to members of European Parliament and Technicians elaborating proposals for FP7. • Meetings where Spain elaborates proposals. Spain proposed to include funding for neurological rare diseases in FP7. • Funding for neurological rare diseases is approved by the EC. • We will support, alone or in collaboration with other European ataxia patient Associations, the ataxia network and ataxia research in FP7.

  9. ACTIVITIES SUPPORTING RESEARCH (VIII) • We have provided with funds support to: • Obtaining recombinant IGF1 • Ataxia research in Gregorio Marañón Hospital, Madrid. • Ataxia research in La Paz Hospital, Madrid. • Ataxia research in CBM-CSIC, Madrid. • Ataxia research on TAT-frataxin. • More calls to fund projects in a near future, depending on budget.

  10. Our work to disseminate ataxia • Through our webpage. • Through our monthly newsletters. • By e-mail and communications of all types. • By participating in National and International meetings and being active members of Associations. • By organising meetings on ataxias y promoting National and Europeans (FP7) research networks. • Visiting Research Centres and Hospitals. • Promoting and Lobbying funding excellent research on ataxia in Spain and Europe.

  11. Our work to disseminate ataxia • Organisation of the next EuroATAXIA General meeting in BARCELONA, SPAIN! • 25-27 September 2009 • You are all invited!!!!

  12. Many thanks to: • Miguel Angel Cibrián, President of FEDAES. • AllfriendsformingtheSpanish Ataxia Association FEDAES. • Dr. Antoni Matilla-Dueñas, for translatingtheseslides and hiscollaboration and friendshipduringalltheseyears. • Toall of you for attendingthislecture in Spanish, and for yourdedicationto ataxia research. Be welcome and thankyou!

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