20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared for the first time on TV screens.

On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.

One month later,  we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.

Annie Moissin, wha was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happenend next.

Thanks to you Annie,

Thanks to Solhand of which you are now the Chair.,

One can do nothing alone, Together we are stronger, we go further.

Marie-Claude Boiteux

Chair of Cutis Laxa Internationale,  Cécile’s mother

Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)

During the 5th annual meeting of the French Health Network FIMARAD (Network for Rare Cutaneous Disorders), Marie-Claude Boiteux presented the ePAGs’ work for Patients in ERN-Skin (in French at 9:57)

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

 

ERN-Skin Board Meeting

On 2nd october 2020, ERN-Skin held its annual Board meeting, online, due to the pandemic. We missed individual discussions but appreciated the very interesting presentations:

2020 success and clinical practice guidelines

Covid-19 observational study                          SPOT 2021 steps

Cutis Laxa success

 

Patient Representatives work in 2019/2020

“SUMMER MUSIC” IN FANTASIA PARK

7th August : After several months in lockdown, it was a real pleasure to participate in the « Summer Music » evening in Fantasia Park in Annemasse (France).

Respecting all sanitary recommendations we were able to welcome people at our stall where they could find, besides our now usual sausages and french fries, information on Cutis Laxa as well as various jewellery and items we sell.

 

A very friendly evening which allowed us to get some funds, more than welcomed with all our other scheduled events being cancelled.

RARE DISEASES INTERNATIONAL (RDI) ANNUAL GLOBAL MEETING

Rare Disease International (RDI) Annual Meeting and Conference, was held on 19th May, online as many others. Here are some screenshots of that important event we attended online from CLI’s home/office.

RDI and WHO : Universal Health Coverage and Rare Diseases

ORPHACODES : Universal name for each disease

RDI Action Plan 2020-2021

Rare Disease Patients and Covid-19

EUROPEAN CONFERENCE ON RARE DISORDERS

European Conference on Rare Disorders (ECRD) on 14th and 15th May which gathered together over 1,500 people from 57 countries, was held online as many other event in 2020.

Even without face to face meetings and gathering it was a real success and we learnt so much.

EURORDIS ANNUAL GENERAL MEETING

Of course, during lockdown, many events and meetings have been cancelled or replaced with online meetings due to the health constraints. It was the case for Eurordis Annual Meeting on 13th May.

2019 had been a very fruitful year with so many opportunities to work and learn.

THE GOSPEL CHOIR SINGS FOR CLI

Shortly before lockdown, the Gospel choir had organized a masterclass and we were given the benefits. Cécile, together with her brother and her sister took part in this singing and joyfull afternoon.

CLI

AND ALSO IN 2019

11th  April :  The Annual General Meeting of France Assos Santé – Auvergne-Rhône-Alpes ( local federation of health organsiations) was held in Lyon. It was the opportunity to meet our friend Roger Picard, and many other members of the Federation.

29th November : We received the cheque from the  Triathlon of Sireuil

 

09th December : We met the Gospel Choir… some projects for 2020…