ERN-Skin Annual Board Meeting 2020

2nd October 2020 : ERN-Skin annual Board Meeting was a great success : 4 new affiliated partners joined, coming from 4 countries not yet represented in our ERN ;

the results of the ongoing work,

and especially the annoucement that Cutis Laxa is one of the 10 disorders selected by the coordinators of the subthematic groups that will be prioritized for the developpment of clinical practice guidelines/clinical decision tools-

these show show the dynamism of ERN-Skin.

The patient representatives (ePAGs) presented their work too, especially the « Patient Journey » for several of the disorders concerned by ERN-Skin.



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.


03rd  December  First Conference on Skin and Annual Meeting of the French Federation of Skin during the Dermatology Days of Paris.


The presentation of Pr Andrew Y Finlay from Cardiff  University highlighted the questionnaire on Quality of Life for patients with skin disorders, may they be rare or not.

This questionnaire should be proposed to patients by all dermatologists.

After this Patient Organisations took stock of their activities and difficulties.


26 – 27th November  Leadership School organised by Eurordis.

After several online  courses throughout the year, patient representatives in the ERNs met in Barcelone for the last two training days in Leadership.

We will be issued with a Diploma at the end of the course.

Even if the Catalan setting tasted like summer vacation, it was two days of real and hard work during which we increased our natural capacities and skills to become more efficient when interacting with health professionals in the ERNs.



The aim of this Leadership school has been reached as we gained the competences required to improve the way we bring patients’ voice forward where it matters most.


ERN-Skin Board Meeting 2019

ERN-Skin Board Meeting in Necker Hospital in Paris.

Two days of intense work, whether in plenary session or in thematic groups.


Patient representatives could express their wishes and dialogue with doctors and researchers to establish together the roadmap for the coming years.

There is a huge amount of work to do but our will and synergy will allow diagnosis, care and treatment for patients to improve at the European Union level



The Annual General meeting of Solhand followed by the Annual Conference was held in Paris.

What a pleasure to meet with our friends, Chairs of other organisations, to share this important annual moment, to share our successes and difficulties and to learn, more and again, about each one’s journey.

A delicious diner, Camille’s birthday and an eclectic concert, from rock and roll to gospel and bel canto,   ended the day with great joy.