Cutis Laxa Videos….. N°2

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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

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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

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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 !!

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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 !

CUTIS LAXA WHITE BOOK

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Since  Cutis Laxa Internationale was set up, we have received many patients’ and parents’ testimonies.

They are now collected in a newly published book :

« Cutis Laxa, Story of a Rare Disorder, Patients’ testimonies ».

It is available in French, English and Spanish. We will send it to you on request, at €25 per copy.

The French Federation for Skin published its plea

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The French Federation for skin is publishing its plea aiming to :

  • Improve skin patients’ quality of life on a long term basis ;
  • Fight against social and local inequalities ;
  • Ease health journeys and carers’ work ;
  • Offer a global care respecting patients’ needs
  • Get patients’ expertise and role in the healthcare system recognised

read the plea here ( in French)

Living with a Rare Disorder in France

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Orphanet has just edited its new study about rare disorders in France.

You can read here the whole study (in French)

RARE 2030

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On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis held the “Rare 2030 Final Policy Conference”.

Over 1100 participants representing all stakeholders groups of the rare disease community took part in this event, learning, exchanging and celebrating together.

Find here the Rare 2030 Recommandations

Have a look at Rare 2030 website

20 YEARS AGO ……

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Cécile was diagnosed in 1992.

8 years later, she appeared for the first time on TV screens.

On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.

One month later,  we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.

Annie Moissin, who was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happened next.

Thanks to you Annie,

Thanks to Solhand of which you are now the Chair.,

One can do nothing alone, Together we are stronger, we go further.

Marie-Claude Boiteux

Chair of Cutis Laxa Internationale,  Cécile’s mother

Living with …. Cutis Laxa

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The French monthly magazine “La Revue du Praticien” (The Medical Practitioner’s Journal) published an article on Cutis Laxa in its November issue.

 

Read the article here (in French)