FA Patient Registry

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.
	Brazil - ABAHE Nascemos da necessidade de haver uma instituição que representasse os portadores de ataxia e as demais pessoas envolvidas na questão.
	Brazil - AFB Veja acima (ABAHE) para contato
	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.
	India - Ataxia Awareness Society The Ataxia Awareness Society (AAS) is an organization for people with ataxia and for their families and friends in India. The organization offers support, advice, and information for people living with the condition and encourages research on ataxia in India.
	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.
	Portugal - Associação Portuguesa de Ataxias Hereditárias (APAHE) A APAHE é uma associação sem fins lucrativos e de âmbito nacional, que nasceu em 2006, como forma de preencher uma lacuna na sociedade civil portuguesa: uma associação que não só defendesse e protegesse os interesses das pessoas com ataxias hereditárias.
	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.