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Incontinentia Pigmenti France - maladie rare

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Last weekend in August : national families meeting Print E-mail
samedi, 12 avril 2008

August 30th  and 31st  in Saint-Etienne

For the first time since it was created our association will organise a meeting of the families affected by Incontinentia Pigmenti so everyone can get to know the others, relate and compare what it is like to live with IP and share meals and entertainments.

That weekend the Camille association in Saint Etienne will hold the yearly football championship they organise to raise funds for IP and we will join them for a weekend’s meeting of families.
- Saturday: Football championship, charity fête and activities in aid of the association
                       All day Stade Drury, rue Octave Feuillet, quartier Côte Chaude
                       Open to everyone
- Saturday evening and Sunday: Meeting of the families affected by the disease and the voluntary workers of the association in and around Saint Etienne.
Everything will be done so everyone –older or younger- can enjoy this meeting: activities, sharing of experience, information on the disease, games,  the pleasure of chatting….. Some members of the medical staff treating or researching on the disease throughout the year will be present and will be ready to answer questions.
Whether we are affected by the disease or just  parents or friends, we all know how much it matters to be able to discuss that disease, what it is like to live with it, the daily difficulties entailed by it, but also the hope raised by today’s research.
That is why we hope many of you will join us for that weekend.
If you are interested in coming, please contact
Anyck PEZERY.
 
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