Cutis Laxa Videos …… N°7
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.
Cutis Laxa Videos …. N°6
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:
Cutis Laxa Videos …… N°5
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
Cutis Laxa Videos …… N°4
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 :
Cutis Laxa Videos …….. N°3
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
Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude Boiteux talks about “difference and psychological impact”
and here is how you can get subtittles in your own language
see you next week for episode N°3
Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile talks about what it is like to live with Cutis Laxa.
https://www.facebook.com/letribunaldunet/videos/1782251148618795
We are sorry it is only in French.
Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube Channel
Marie-Claude Boiteux explains what Cutis Laxa is and the different types.
It is in French, but here is how you can get subtittles in your own language
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview with Marie-Claude Boiteux to publish videos talking about Cutis Laxa: what it is, the diagnosis, treatments, Cutis Laxa Internationale, etc
Once a week, on sunday, they will edit one video. And there are 8 videos. We are sorry there was no funds to get them subtittled in English we hope you can understand French.
Here is the teaser announcing the videos on their facebook page
They also talked about Cutis Laxa on their facebook page
Here is their Youtube channel where the videos are posted.
ENJOY watching them !
Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)
During the 5th annual meeting of the French Health Network FIMARAD (Network for Rare Cutaneous Disorders), Marie-Claude Boiteux presented the ePAGs’ work for Patients in ERN-Skin (in French at 9:57)
Here is how you can get subtittles in your own language :