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 !

FUNDRAISING PAGE

Help us raise enough funds to organise the next Cutis Laxa Days.

Go to our secured fundraising page, thank you

https://www.leetchi.com/c/cutislaxainternational?fbclid=IwAR0HRdStl2FoSBi3_sH5ckcMf7Rw-CJuZYhoOP2ZZb8dI8cjJG6IjVZh0Hc

CUTIS LAXA WHITE BOOK

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

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

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

You can read here the whole study (in French)

RARE 2030

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