1st, 2nd & 3rd December 2021
For the first time this year we had a stall during the Dermatology Days of Paris.
With its conferences, pharmaceutic and cosmetic laboratories stalls, Associations’ village,
and e-posters, there’s no need to demonstrate the richness of those days.
It was the opportunity for many exchanges with health professionals as well as with association leaders,
all concerned by dermatology.
30th November
The 3rd Conference of the French Federation for Skin was opened by Mr Olivier Véran, French Minister of Health and Solidarity. Convinced that democracy is necessary in health issues, he recognised the quality of the FFP advocacy and the real obstacle course its 21 member organisations can face.
Watch his message here (in French) : https://www.youtube.com/watch?v=Bvm0lmixr7E
Even if I cannot tell you more since publications have not yet taken place, I am very happy and proud of our researchers who work on Cutis Laxa :
5 NEW MUTATIONS have just been discovered.
For all patients whose precise type has not yet been identified, this is an extraordinary chance.
You can be tested now with the new mutations.
Attending the 6th Cutis Laxa Days in Ghent in September 2022 can be the opportunity for you to know more about the precise type you are suffering from.
They talk about Cutis Laxa :
On 16th March, Chiara’s testimony (in French and in Italian) was posted on Facebook : https://www.facebook.com/photo?fbid=3509557279156318&set=pcb.3509561645822548
On 7th April, « Le Tribunal du net » edited an interview with Cécile (in French). Watch it again on our website https://www.cutislaxa.org/fr/quoi-de-neuf/ (videos) or on the “Tribunal du Net” page “https://www.facebook.com/letribunaldunet/videos/1782251148618795
In April and May, every week, Ewenlife published one of the 8 videos about Cutis Laxa. From diagnosis to medico-social care and treatments, all issues are tackled. You can watch them again (in French or with subtitles in your own language) on our website https://www.cutislaxa.org/fr/quoi-de-neuf/ (videos) or on Youtube : https://www.youtube.com/watch?v=XPI5X03FOEw&list=PLvUNl3idDQjTKEL_-tfQjZUE9ixRnH_aD
Here is the 8th …..and last…..of our videos
“Advice and support : “we are here !”” … this is my conclusion
and also how we, parents, can help our “different” children.
I hope you enjoyed those videos.
you can find the 8 videos on the playlist :
and don’t forget you can have subtittles in your own language
Treatments and surgeries are the topics of our 7th video about Cutis Laxa
And don’t forget you can get subtittles in your own language.
Let’s watch the 6th episode of our videos about Cutis Laxa.
Today : the difficulties with the administration (in France but maybe same issues in other countries) and how CL patients must sometimes struggle to get their rights respected.
and don’t forget you can get subtittles in your own language:
Today’s topic is our organisation “Cutis Laxa Internationale” celebrating its 20th anniversary on 11th November 2021
and how many CL patients are there worldwide as of today (April 2021)
Remember you can get subtittles in your own language
Today I talk about the impact of the disorder in adulthood: love life, finding a job, etc.
and you can get subtittles in your own language :
Here is the third episode of our videos.
A painful and emotional memory…… receiving the diagnosis…….
and here is how you can get subtittles in your own language