Dedicated network of solidarity to the families of patients concerned by Ondine syndrome called also Congenital Central Hypoventilation Syndrome (CCHS). Our other concerns are to help patients for a better social, educational and professional integration and to help to prepare children and teenagers with their adult lives, to support families and enable them to breathe, to defend the rights and interests of patients, to disseminate information about the disease and its modes of care and to promote research and establish a link with the medical world.
| Website | http://www.afsondine.org |
| Employees | 1 (1 on RocketReach) |
| Founded | 1997 |
| Industry | Non-profit Organizations |
| Keywords | Rare Disease Support, Family Support Network, Rare Disease Community, Family Support Resources, Community Support Network, Patient Advocacy Group, Medical Advocacy, Health Advocacy, Patient Empowerment, Educational Support Services, Disability Support |
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Sharon Gilles
Project Manager at French CCHS Network
Winnipeg, MB, CA
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