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)
Here is how you can get subtittles in your own language :
We were able to attend the JDP online, so as to be visible despite everything.
We had a space in the virtual “Associations’ Village” and our Poster was accessible online by any and all visitors
Nevertheless we sorely missed the opportunity for face to face meetings with representatives of laboratories to talk about our activities.
On 1st December 2020 we attended online the Annual Meeting and 2nd Conference of the French Federation for Skin (FFP).
Following the 2020 annual report and the projects for 2021, 
the FFP conference opened the floor to experts on the impact of Covid-19 for skin disorders,
paediatric dermatology, users’ participation on the evaluation of health products
and dermatology research.
Needless to say that it was an intense and riveting morning.
27th November 2020 : The Annual FIMARAD meeting (French Health Network for Rare Skin Disorders).
Core discussions of the day were : Taking stock of the work done in 2020;
Issues of the MDPH files (Local House for Disabled People); How to involve Patient representatives;
organising the workgroups for 2021;
and ePAGs’ work
See the presentations here
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