Daily newspaper « Le Monde » Grand Angle : dossier on Rare Disease
/in In the media, Legislation - Society, News /by Marie-ClaudeTeachers’ role in the inclusion of students with rare diseases
/in In the media, Legislation - Society, News /by Marie-ClaudeA new study published in “Frontiers in Psychology” investigated the different teaching variables which affect the inclusion of students with rare diseases. In education, as in other fields, those students have specific needs. These needs are often unmet, due to a general lack of education of teachers and the wide variety of rare diseases. Data collected from the questionnaire filled in by teachers in La Mancha (Castille-Spain), shows that while they were in favor of including students with rare diseases, as a whole, they lacked the requisite knowledge about their specific needs. These results indicate that specific training and resources to offer bespoke educational responses to students with rare diseases are needed. If teachers are more aware of the specific challenges facing these students, their needs will be better addressed and their wellbeing will be improved. (orphanews 2023.01.31)
Youtube with “Tibo InShape”
/in In the media, Legislation - Society, News, Video /by Marie-ClaudeNew video
Cécile was interviewed by #Tibo InShape on his youtube page.
A very serious, but joyful, moment that also allowed us to open an online funding page
https://www.leetchi.com/c/cutis-laxa-international
Cutis Laxa Videos ……… N°8 ……. last one
/in In the media, Legislation - Society, News, Video /by Marie-ClaudeHere 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°6
/in In the media, Legislation - Society, News, Video /by Marie-ClaudeLet’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
/in In the media, Legislation - Society, News, Video /by Marie-ClaudeToday’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
/in In the media, Legislation - Society, News, Research - Medicine - Genetics, Video /by Marie-ClaudeToday 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 :

6th CUTIS LAXA DAYS
/in In the media, Legislation - Society, Meetings, Events and Exhibitions, New contacts, new families, News, Photos, Research, Research - Medicine - Genetics, upcoming events /by Marie-ClaudeSAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022









