Teachers’ role in the inclusion of students with rare diseases

A 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)

ERN-Skin ANNUAL BOARD MEETING

13th January 2023 :

ERN-Skin Board Meeting.

2023 is a transitional year for all ERNs.

The first 5-year period ended in 2022. 2023 will therefore be a transition and evaluation year before a new validation by the EU for a new 5-year period to 2028.

 

The meeting was an opportunity to take stock of what was done and present future projects.

A NEW MUTATION : EMILIN1

Adamo et al. describe a cutis laxa syndrome caused by bi-allelic loss of-function variants in EMILIN1 characterized by arterial tortuosity, aneurysm formation, and osteopenia. They provide a model in which EMILIN1 connects elastic fiber network with collagen fibril formation, relevant for both bone and vascular tissue homeostasis.

 

Read the publication

Youtube with “Tibo InShape”

New 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

 

Welcome

New Patients

Cutis Laxa Internationale now gathers 517 patients coming from all parts of the world:

Stacy, Amber, Ayse, Celia, Deacon, Emmy, Scott, Anna, Em, Amelie, Patricia, Yousef, Nora Grace, Warisha and Nicole joined us since our last newsletter.

Our Big Cutis Laxa Family is glad to welcome them and give them all the help and support they need.

 

Very sadly I need to let you know that two of our members passed away : Anaaya, 3 ½ , in India and  Dominique, 51, in France. Again, we send our deepest condolences to their families. May they Rest in Peace.

GOOD-BYE

Time to go home….. It is so hard to leave each other.

Longing to meet again ……. Roll on the 7th Days …