Patients’ inequalities of treatment

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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

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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

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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

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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

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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

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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.