Alas, we are very sad to let you know about two deaths:
Lucille, who joined our private Facebook group in 2010 and was an active member
and
Safaa who was only 18.
To their mourning families we give our support and thoughts in this difficult time.
Since we set up CLI in 2002, 27 patients have passed away. They remain in our hearts and thoughts.
According to the rythm established in 2024, attending numerous meetings and webinars online meant better progress with some projects and greater knowledge and competencies to carry on raising patients’ voice
03rd-06th December 2024
Dermatology Days of Paris (JDP)
Thanks to our stand during the JDP, I have had the great joy, more than 30 years later, to see again Dr Karim CHERTI.
At that time, he was a junior doctor in the genodermatosis unit at Hôpital Saint Louis in Paris. He was a member of the team who diagnosed my daughter, Cécile, and wrote his thesis on her case.
It was a very moving moment for both of us.
03rd December 2024
6th Conference of the French Federation for Skin (FFP)
This event is unmissable: the opportunity to gather together, evoke the achievements of the year and explore future projects in round-tables and interactive workshops.
It was also the last time I was leading the FFP Conference as my 3 years mandate chairing the FFP has come to its end.
Marie-Claude Boiteux was interviewed for the videos used during the Masterclass at the University for Patients in La Sorbonne (in French) (https://universitedespatients-sorbonne.fr/). The title of the presentation is “From loneliness to an International Organisation”. see it here (in French)
26th November 2024
Pfizer Patient Forum
Marie-Claude Boiteux participated in a roundtable on « Minimising obstacles and maximizing impact: key learnings from pilot projects and advice for action”.
A huge THANK YOU to the leading team of the sport events organised in Sireuil, France (Trail du Brin d’Aillet and Triathlon). Thanks for faithfully supporting us, thanks to the energy you put in organising those events, thanks to the volunteers who work with you and support those sport events.Thanks also, of course, to all the sportsmen/women who participate: you are handing over € 2,500. That is enormous for us !!!
Thanks to you, we will be able to help patients come to Ghent, Belgium, to attend the Cutis Laxa Days and benefit from a consultation with Pr Bert Callewaert, worldwide expert for Cutis Laxa.
On behalf of of all the patients, I am deeply grateful to you.
Marie-Claude Boiteux, Chair
08th November 2024
FIMARAD Annual Meeting
Patient organisation representatives attended the Annual Meeting of the French Network for Rare Skin Disorders.
On this occasion, they especially mentioned the progress of the working group « Diagnosis roving and impasse » with the analysis of the patient survey. The results of this survey are planned for publication
28th-31st October 2024
European Elastin Meeting (EEM 2024) in Reims.
All the scientists working on Elastin were gathered together on the initiative of the teams at Reims University.
These days were fascinating, instructive and created therapeutic hope.
To top it all, it was a great joy to meet Pr Zsolt URBAN from Pittsburgh as well as researchers from Pr Romain DEBRET’s team in Lyon.
All the exchanges, shared moments, the possibility to give patients’ point of view, as well as relaxing times: these were the keys to the success for these 3 days. We also know that future collaborations will result from them.
It was really important to be there.
24th-25th October 2024
ERN-Skin Board Meeting at “Institut Imagine” in Necker Hospital in Paris.
This important annual gathering allow us not only to meet again and make time for face-to-face exchanges on future projects, but also to take stock of what we have achieved during the past year.
