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.

FRENCH FEDERATION FOR SKIN

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.

LEADERSHIP SCHOOL IN BARCELONA

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

 

SOLHAND ANNUAL MEETING

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.