Rencontre à Bourg les Valence
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Uploaded by rarediseaseday on Feb 27, 2009
patients are often the only experts, that is why to gather through internet to share information each find by professionals is not only helping the patient, their families, but also their friends and the professionnals. We met on internet in 2002, 34 of us, are now 6000, made several welsite and built a Foundation. this year, a researcher has been named. All that due to patients'efforts.
all have been working, all deserve to be on the video.
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Thank you for this video - for helping to bring the sufferers out of silence.
YouMustBeKidding666 2 years ago
Very nice and sentimental video...
Thank you and take care, Marek
tarlovian 2 years ago
Stunning achievement, May it serve to help obtain recognition and treatment for this painful chronic condition from which so many people suffer unrecognised and untreated.
Best wishes, Myriel
myrielmorley 3 years ago