Journal Radiorg (Belgium)
28th February 2022 :
Grand Angle : Journal Radiorg (Belgium)
Testimony with Amber’s mother on the occasion of Rare Disease Day
La Gazette Bonsoise
Winter 2022 :
La Gazette Bonsoise : Associations’ Life : Cutis Laxa Special
IN THE MEDIA
6th October : Le Dauphiné – Bons en Chablais :
On the occasion of « Pink October » and in partnership with the local council of Bons en Chablais, Cutis Laxa Internationale held an information stall and sold various items.
11/10/21 Le dauphiné – Bons en Chablais : Pink and Blue Walk
The health organisations of the town were associated with the Blue Walk dedicated to elderly people and with Pink October dedicated to Breast Cancer.
Autumn 2021 : La Gazette Bonsoise :
Report of all the events organised on the occasion of « Pink October ».
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 :