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)
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
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
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 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 (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.
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.
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.
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…