6th CUTIS LAXA DAYS

SAVE THE DATES

The 6th Cutis Laxa  Days will be held at the University Hospital of Ghent( Belgium)

on 14th, 15th and 16th September 2022

 

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

Watch Cecile’s interview

WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.

The European Commission, Patients and ERN Coordinators give their point of view

European Commission (in almost all European Languages)

https://audiovisual.ec.europa.eu/en/video/I-193046

Patients (in English and/or with English subtitles)

https://audiovisual.ec.europa.eu/en/video/I-191813

ERN Coordinators (in English and/or with English subtitles)

https://audiovisual.ec.europa.eu/en/video/I-191812

CLI VIDEO ON YOUTUBE

The French Skin Federation (FFP) has launched videos (in French) from its member organisations on youtube.

Listen to Marie-Claude Boiteux talking about Cutis Laxa Internationale

 

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.

Patients’ and associations’ role is poorly recognised

The COVID crisis reveals how patients’ and associations’ role is poorly recognised (Newspaper Le Monde 2020.07.06)

In this newspaper article, three members of the French association Renaloo (kidney failure) make an unanimous  statement : Associations of Health Users were forgotten in the heart of the sanitary crisis :

  • There were no official recommendations for « at risk » people.
  • Associations had to establish themselves « Recommendations for patients » based on international recommendations or those from other countries. ;
  • Nothing was set up to allow « at risk » people to stop working as soon as the crisis started ;
  • Cooperation with patients and their associations was considered incidental and with no priority ;
  • Despite the collective stakes we all had to face, democracy in health suffered a lot ;
  • Never quoted as being part of the various parties committed to protect vulnerable people, nevertheless patient associations were working on all fronts during this period ;
  • In France, except a few cases, patients associations have not yet reached the place they deserve in the medical world;
  • Government communication about vulnerable people focuses only on older aged people and forgets young and active people who are fragile too.

 

Nothing should be done without Us !

Dawn Laney, a RARE Hero

In its issue N°15, April 2020, Rare Revolution Magazine, talks about Dawn Laney, Dave Jacob’s daughter, who set up Thinkgenetic with her father. Dave is one of our members.

David Ross, a RARE revolutionary

In its issue N°15, april 2020, Rare Revolution Magazine publishes an interview with David Ross, one of our members.

Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?

Humorous, but very serious

Pr Mickaël Dinomais, Professor in Physical and Readaptation Medicine, at the University of Angers (France), published a very interesting article.

He studied the famous French cartoon character “Gaston Lagaff” and, considering all the clinical features and symptoms, could diagnose that he suffers from Ehlers-Danlos Syndrom.

This is a very interesting and entertaining way to describe a disorder.

Read the all article, in French, at :

http://theconversation.com/gaston-lagaffe-a-t-il-un-syndrome-delhers-danlos-130907