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Advocacy

Argentina - La Asociación Civil de ATaxias de ARgentina (ATAR)
Potenciar todos los canales de información y sistemas de ayudas para los/as asociados/as y buscar medios que puedan mejorar la calidad de vida de los/as asociados/as.
Argentina - Ataxia Patients and Friends Group – Argentine Association
Centrando el interés en las ataxias hereditarias y siendo consideradas enfermedades poco frecuentes, el grupo que reúne a pacientes con ataxia ha decidido aunar esfuerzos junto a Fadepof para resolver la problemática de base de todas estas enfermedades que afectan a una parte pequeña de la población
Australia - fara Australia
The Friedreich Ataxia Research Association (fara) is a not for profit organisation that supports research into treatments and a cure for Friedreich Ataxia.
Canada - ataxia/ataxie Canada
The mission of ataxia/ataxie Canada is to bring people living with an ataxia together, as well as the community of interest, in order to promote and protect the ataxic persons, improve their well-being and ultimately eradicate their disease.
Europe/International - Euro Ataxia
Euro-ataxia is an international non-profit association whose member organisations work together to help people with progressive ataxia lead their best life.
France - L'Association Française de l'Ataxie de Friedreich
- Aider la recherche médicale, en participant à son financement et en collaborant à certaines études
- Promouvoir l’information sur la maladie et le suivi.
- Créer des liens d’amitié entre les adhérents.
- Accompagner malades et familles dans leur quotidien par des informations et contacts divers.
Germany - Deutsche Heredo-Ataxie Gesellschaft
Selbsthilfeorganisation für die Ataxie-Krankheit; ein eingetragener, gemeinnütziger sowie mildtätiger Verein. Die Betroffenen haben verschiedene Ataxie-Erkrankungen, die sich unterschiedlich auswirken und zu vielfältigen Störungen führen können. Allerdings verbindet alle das Symptom Ataxie.
Germany - Friedreich Ataxie Förderverein e.V.
Verein zur Förderung der Erforschung und Behandlung von Friedreich Ataxie
Greece - Hellenic Friedreich's Ataxia Association
Ο Σύνδεσμος Ataxia του Hellenic Friedreich έχει ιδρυθεί ως ελληνικός μη κερδοσκοπικός σύλλογος από ασθενείς και γονείς που επηρεάζονται από την Ataxia (FA) του Friedreich με σκοπό να υποστηρίξει την έρευνα και να βελτιώσει την ποιότητα ζωής των ασθενών Ataxia του Friedreich.
Ireland - FARA Ireland
Works to develop a strong connection with international research on Friedreich’s Ataxia, raises funds for research and increases public awareness about the plight and condition of people with Friedreich’s Ataxia.
Italy - Italian Association for the Fight Against Ataxia Syndromes
L’Associazione Italiana per la lotta alle Sindromi Atassiche è formata unicamente da volontari ed opera nel campo del Volontariato Sociale e Sanitario per incoraggiare e promuovere la ricerca scientifica genetico molecolare, biochimica ed immunologica sulle Atassie.
Lebanon - FALA
Provide people living with FA with physical, medical and psychosocial support services enabling them to better manage their living conditions.
New Zealand - Friedreich Ataxia Research Association New Zealand
Advocating and supporting people with Friedreich Ataxia to have the best care, treatment and quality of life.
Spain - La Federación de Ataxias de España (FEDAES)
La Federación de Ataxias de España (FEDAES), es una Entidad sin ánimo de lucro que, englobando a diversas Asociaciones Regionales de Ataxia y formando parte de otras federaciones nacionales y europeas, tiene por finalidad principal promover el estudio y la investigación científica en el campo de las ataxias, estas enfermedades minoritarias y poco estudiadas hasta la fecha.
Spain - BabelFAmily
Non-profit organization headquartered in Spain; a worldwide group of volunteers that unite their skills to support the greater FA community of patients, doctors, researchers, scientists and associations in their mission to find treatments and a cure for Friedreich’s ataxia.
Sweden - Bota FA
Vi är en förening för personer med sjukdomen Friedreichs Ataxi (FA), för anhöriga och alla som vill hjälpa oss att hitta ett botemedel och få stopp på denna sjukdom.Här kan ni lära er mer om sjukdomen av personer som själva har den och lever med den varje dag.
U.K. - Ataxia U.K.
The leading national charity in the UK for people affected by any type of ataxia. Funds research into finding treatments and cures, and offers advice, information and support to people affected by the condition.
U.S. - FARA U.S.
Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.
Please contact the registry coordinator at FAGPR@curefa.org
if you would like to have an advocacy organization added to this page.

The FAGPR has been collaboratively built on Pulse Infoframe's healthie™ platform.