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Since February 1st 2009
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Welcome on the French CCHS Network

This site is a dedicated network of solidarity to the families of patients concerned by Ondine syndrome called also Congenital Central Hypoventilation Syndrome (CCHS) and those affected by this disease.

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.
We are all volunteers and we are conducting these activities financially through membership subscriptions, donations and sponsorships.
In any case we don't substitute to doctors who follow patients. We work very closely with the medical profession.
   

"Syndrome Ondine" Podcast on a french radio "Vivre FM"
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Last Updated on Tuesday, 02 March 2010 10:33 Written by Web Master Monday, 22 February 2010 22:23

"Syndrome Ondine" Podcast on a french radio "Vivre FM"


Nathalie FRANCKHAUSER President of AFSOndine was invited to the french radio "Vivre FM" on February 22nd, 2010 in its issue dedicated to associations She explained Ondine syndrome and answered many questions.

   

Newsletter of the Association - January 2010
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Last Updated on Sunday, 31 January 2010 23:15 Written by Web Master Sunday, 31 January 2010 23:00

 

We are pleased to issue the January 2010 newsletter of the French Association of Ondine syndrome.
The following themes are developed in this edition:

  • External Evaluation of the reference center.
  • The center's adult reference center.
  • The pathophysiological research on frogs
  • Testimony: A year in Canada.
  • Pathophysiological research on mice
  • Donations and actions of families
  • The Website
Click on the image to access the document.
   

Collecting donations at Aix en Provence
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Last Updated on Monday, 01 March 2010 13:00 Written by Philippe Imoucha Tuesday, 12 January 2010 08:24

The family of Gabriel Imoucha has started a campaign to collect donations in Aixboite-a-dons-cubique-pour-aix-en-provence en Provence with shops who have kindly accepted our GIVE box.

You can give with the following retailers:

  • The restaurant / snack La Dolce Vita in Aix Les Milles
  • The BP gas service station in Aix en Provence
  • Psychologist Mrs. Gaubert in Aix en Provence
  • The ELF gas station Pont de L'Arc in Aix en Provenc
  • The History of Bread's Bakery Pont de l'Arc in Aix en Provence

If you go from these traders think we make a donation! Thank you in advance.

This campaign will continue the whole year in Aix en Provence on one-month period renewable.

We thank the following merchants for their support for actions already undertaken:

  • The newsagent in the Pont de l'Arc in Aix en Provence
  • The slaughter of the Pont de l'Arc in Aix en Provence
  • La Pizzeria Euro Pizza in Aix en Provence