Monthly newspaper « Le Trombinoscope » – dossier on Rare Disease Day « patients face taxing times and their organisations too ! »

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Teachers’ role in the inclusion of students with rare diseases

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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)

Youtube with “Tibo InShape”

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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

 

Good-Bye ERIC

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I am so very sad to announce that Eric MOLINIE left this world on 21st December 2022.

Eric was former chair of AFM-Téléthon in France. He was himself diagnosed with Duchenne Myopathy.

He is the one who made it possible for Cutis Laxa to be known and research be done.

We had explained to Eric that without enough known patients research would never be done on such a rare disorder. He had promised that if we knew at least 10 patients, AFM-Généthon would start a research.

In december 2001, Cécile took part in the French Téléthon for the second time. At that time, we knew of 9 patients in France and abroad. Cutis Laxa International was just 1 month old, being set up on 11th November 2001.

We were on stage, live, explaining that 10 patients were needed, at least, to start a research, when Eric quickly rolled his wheelchair to join us, saying that a 10th patient had called the AFM and that, keeping his promise, Genethon will start a research project.

And on February 2002, it started.

We were all crying on stage. And still today, 20 years later, this memory brings me tears and shivers.

Thank you Eric, Without you the 520 patients we know of today would not have research going on giving them hope for the future.

Thank you Eric, for staying faithfully at our side during all these years.

Rest In Peace dear Friend

 

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