In the Media

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

Cutis Laxa Videos ……… N°8 ……. last one

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

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.

Patients’ inequalities of treatment

Patients’ inequalities of treatment

(Opinion piece published in « Le Monde » (French newspaper) on 15th May 2021).

Even if this piece concerned Bourneville Tuberous Sclerosis, another rare skin disorder, Cutis Laxa shares most of its arguments :

* The Diagnosis odyssey

 

* Various Symptoms that do not make the disease « visible » to the Authorities

 

* Only one support organisation, the only recourse to advocate for patients’ rights, and the only source of funding of projects led by the organisation.

 

Little/no support for research

 

* Depending on where they live, some patients do not have access to expertise for their disease.

 

Refusal to cover travelling costs to hospitals

 

It is necessary to break those inequalities in funding and favour patients instead of economics.

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.