For a few years now, AMADE has been stepping up its number of projects in favor of rare diseases *, whose needs are growing every day. This is why AMADE supports the French Association of Ataxia of Friedreich ** (AFAF) at the beginning of this year as part of its project "Technological Innovations and Inclusion of Children with Friedreich Ataxia". ".
This innovative and inclusive project, conducted in partnership with AFAF, the APF Lab - Le Hub and the Princess Grace Foundation (FPG), meets a triple expectation of families:
- That of developing and/or maintaining the autonomy and quality of communication of children with Friedreich Ataxia (AF), despite increasing difficulties, through the use of new technologies,
- That of looking for and putting in place solutions of help to the communication in particular to avoid the descholarization of the patients,
- That of facilitating access to communication tools to prevent social exclusion.
In the current year, at least 25 children and young adults with Friedreich's ataxia will be able to benefit from this project, 25 children and young adults will be able to hope to live their illness differently.
To find out more about the project: https://www.amade-mondiale.org/en/missions/health/fighting-the-negligees-maladies.html
* In France, a disease is said to be rare when it affects less than 30,000 patients by pathology. Thus, more than 3 million French people are affected by one of the 7 000 rare diseases known to date and about 25 million people in Europe.
** About 1500 people are affected by AF in France. Considered to be the most common hereditary ataxia, this neurological disease, progressive, rare, of genetic origin, often begins in adolescence, sometimes in childhood or in adulthood. Above all, it results in disorders of balance and coordination of voluntary movements (ataxia). Cardiac involvement, osteoarticular disorders (scoliosis, hollow feet) and diabetes are sometimes associated.