08th November 2024
FIMARAD Annual Meeting
Patient organisation representatives attended the Annual Meeting of the French Network for Rare Skin Disorders.
On this occasion, they especially mentioned the progress of the working group « Diagnosis roving and impasse » with the analysis of the patient survey. The results of this survey are planned for publication
28th-31st October 2024
European Elastin Meeting (EEM 2024) in Reims.
All the scientists working on Elastin were gathered together on the initiative of the teams at Reims University.
These days were fascinating, instructive and created therapeutic hope.
To top it all, it was a great joy to meet Pr Zsolt URBAN from Pittsburgh as well as researchers from Pr Romain DEBRET’s team in Lyon.
All the exchanges, shared moments, the possibility to give patients’ point of view, as well as relaxing times: these were the keys to the success for these 3 days. We also know that future collaborations will result from them.
It was really important to be there.
24th-25th October 2024
ERN-Skin Board Meeting at “Institut Imagine” in Necker Hospital in Paris.
This important annual gathering allow us not only to meet again and make time for face-to-face exchanges on future projects, but also to take stock of what we have achieved during the past year.
16th -17th Septembre 2024 the event “Exp’Ose Ta Peau” (dare to show your skin) was organised in Roubaix by LéoPharma Laboratory. Located in front of the town hall, we were able to raise awareness on skin disorders with passers-by.
Then, in December, during the Dermatology Days of Paris, « Exp’Ose Ta Peau » had, again, a privileged place.
After two years of hard work, the CONECT project (Cardio-Ocular Network for Connective Tissue disorders) has come to the end of its funding.
It was important to meet to thing about the future of CONECT and the funding it requires, but also about common projects that may concern some of CONECT’s members. This is why we gathered together in Philadelphia 24th to 26th July.
Besides the pleasure to see us without any screen and sharing special moments, we had a whole day of work and reflection about future projects.
They are still in preparation, but I will certainly have the opportunity to let you know about them in future issues of CLI-News. It also was very important to exchange and see how our lives follow similar and parallel pathways.
These are extremely numerous so it is difficult to give all details here. Whether it was Conferences (G5 Health, ECRD, etc), or Annual Meetings (RDI, Eurordis, etc), or workgroups (ERN-Skin, Globalskin, FFP, Fimarad, etc) or even Webinars or trainings sessions(ANSM, AMR, etc), being able to attend on line is more economical, more ecological, less tiring, even though face-to-face meetings allow more richer exchanges.
And many others………………….
The most important event for rare skin disorders was held in Paris from 12th to 14th June.
The World Congress on Rare Skin Disorders (WCRSD) gathered together doctors, researchers,patients and industries.
The patient’s point of view was at the core of common interests with a plenary session organised by the patients which attracted over 150 participants.
The session gave a voice to patient representatives coming from South America, Africa, Nepal and the Philippines.
Two other sessions provided a large space for patients’ participation.
One was dedicated to Patient Education Programmes
and the other touched on the future and how to increase our togetherness to improve diagnosis and treatments.
These were three intense days full of exchanges, discussions and future projects for patients’ improved condition.
In Geneva,
taking the opportunity of the World Health Assembly,
on 29th May, two events were organised to bring the voice of rare and dermatologic disorders to the World Health Organisation (WHO).
Globalskin (IADPO) had choosen « Skin Diseases as a Global Public Health Priority – No Universal Health Coverage without Skin Health » as a subject to think about and work on.
Regarding Rare Diseass International (RDI), the importance of investment in rare disorders was at the heart of discussions with the final aim of The World Health Assembly drafting a resolution on rare diseases in 2025. A first step was made with RDI being admitted as an official partner of the WHO.
The World Skin Health Coalition (WSHC) ended its campaign « Not just my skin » on 19th April. It reached over 5 million people. Materials of the campaign were viewed over 17.8 million times. Over 6,800 people in 130 countries across 6 World Health Organisation regions signed the open letter urging health policy leaders to act.
Today, a great number of meeting, working groups, workshops,etc are on line.
Here is a list of what happened during the last 6 month of 2023 :
9th June : Working Group “Pregnancy” 26th June : Eurordis Patient Partnership
28th June : Pfizer Club “Real Life Data” 28th June : Pierre Fabre “Associations’ funding”
10th October : G5 Health 20th October : Webinar “Lobbying”
13th November : ePAG Steering Committee
28th November : Webinar “Connective Tissue Disorders (PXE)”
11th September and 14th December : World Skin Health Coalition
