Youtube with “Tibo InShape”
New video
Cécile was interviewed by #Tibo InShape on his youtube page.
A very serious, but joyful, moment that also allowed us to open an online funding page
https://www.leetchi.com/c/cutis-laxa-international
Good-Bye ERIC
I am so very sad to announce that Eric MOLINIE left this world on 21st December 2022.
Eric was former chair of AFM-Téléthon in France. He was himself diagnosed with Duchenne Myopathy.
He is the one who made it possible for Cutis Laxa to be known and research be done.
We had explained to Eric that without enough known patients research would never be done on such a rare disorder. He had promised that if we knew at least 10 patients, AFM-Généthon would start a research.
In december 2001, Cécile took part in the French Téléthon for the second time. At that time, we knew of 9 patients in France and abroad. Cutis Laxa International was just 1 month old, being set up on 11th November 2001.
We were on stage, live, explaining that 10 patients were needed, at least, to start a research, when Eric quickly rolled his wheelchair to join us, saying that a 10th patient had called the AFM and that, keeping his promise, Genethon will start a research project.
And on February 2002, it started.
We were all crying on stage. And still today, 20 years later, this memory brings me tears and shivers.
Thank you Eric, Without you the 520 patients we know of today would not have research going on giving them hope for the future.
Thank you Eric, for staying faithfully at our side during all these years.
Rest In Peace dear Friend
4th National Conference of the French Federation for Skin (Videos)
Watch the videos of all the presentations (in French)
Canal JDP
On 3rd December 2022, during the Dermatology Days of Paris (JDP),
organised by the French Society of Dermatology,
Marie-Claude Boiteux interviewed Pr Ludovic Martin for “Canal JDP”:
Journal Radiorg (Belgium)
28th February 2022 :
Grand Angle : Journal Radiorg (Belgium)
Testimony with Amber’s mother on the occasion of Rare Disease Day