I'm a board member of the BabelFAmily association
Asociación BabelFAmily
headquartered at
Calle Monte Peñalara, 16 28660 Boadilla del Monte, Madrid, Spain.
contact details:
[email protected]
[email protected]
website:
http://www.babelfamily.org
BabelFAmily is a non-profit organization headquartered in Spain (CIF: G-85711513). We are a worldwide group of volunteers that unite our skills to support the greater Friedreich’s ataxia (FA) community of patients, doctors, researchers, scientists and associations in their mission to find treatments and a cure for Friedreich’s ataxia.
Friedreich’s ataxia is a hereditary, progressive, neurological disorder characterized by serious disruptions in balance, movement and muscle coordination. FA is typically diagnosed in childhood between the ages of 5 and 15. Symptoms include: fatigue, loss of reflexes, aggressive scoliosis, possible heart condition or diabetes, loss of balance and coordination, slurred speech and vision impairment.
Activities promoted by BabelFAmily
• Encouraging and supporting the financing of biomedical research to find treatments and a cure for Friedreich’s ataxia through partnerships and co-funding initiatives;
• Facilitating information exchanges globally and building links between FA patients, doctors, and the scientific community for improved care;
• Serving as a centralized resource to link FA associations internationally;
• Creating ongoing awareness to ensure Friedreich’s ataxia is known and understood worldwide;
• Providing a constant flow of information and news, in multiple languages, to patients and families regarding conferences, meetings, research projects, and clinical trials.
The BabelFAmily website www.babelfamily.org currently supports 10 languages (English, Spanish, Italian, French, German, Portuguese, Russian, Turkish, Arabic and Serbo-Croatian). This multilingual approach lets us reach new communities and individuals who did not previously have access to information about Friedreich’s ataxia.
