CONECT PROJECT

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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.

On-line Activities

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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………………….

World Congress on Rare Skin Diseases

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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.

 

 

Bringing Skin Patients’ voice to WHO

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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.

NOT JUST MY SKIN

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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.

On-Line Activities

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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

 

 

AND ALSO……. IN 2023

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16th  November 2023 :

Following a first online meeting on 22nd June about Patient engagement, SpotInfoPatients, organised by BMS Laboratory, gathered together several patient representatives for a workshop on the role of decision-makers in the health sector.

 

9th December 2023 :

For the first time, the Fair Committee organised the Téléthon in Bons en Chablais. Cutis Laxa Internationale was present and offered children a range of activities,e.g. drawing hands to make a fresco i.e. our logo and face painting. € 3,050 were collected for the Téléthon

 

18th and 19th December 2023 : 

Marie-Claude Boiteux presented to children aged 11-12 at the Bons en Chablais secondary school: 200 children attended this awareness raisinf talk about skin disorders. The aim was to reduce the stigma and bullying that children with a skin disorder may face at school.

Each child was given the booklet edited by the French Federation for Skin:

« What about talking…. about skin disorders »

 

Dermatology Days of Paris (JDP)

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6th – 8th December 2023

After such a day full of contacts and information during the 5th Conference of the FFP,

it was time to run the booths for FFP and CLI during the three days of the JDP.   

The “ Village of Patient Organisations” where all our organisations are gathered together,

inaugurated by Pr Gaëlle Quereux,

new chair of the French Society of Dermatology,

provides great visibility and the opportunity for interesting contacts.

5th National Conference of the French Federation for Skin

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5th December 2023 :

the French Federation for Skin organised its 5th National Conference,

in preparation for the Dermatology Days of Paris (JDP).

It was a great success with the opening by Senator Philippe Mouiller, Chair of the Commission for Social Affairs,

and the presence of representatives from various authorities in the field of Health.

Four round tables allowed an exchange on the future of dermatology,

teledermatology,

democraty in health

and patients’ role in research.

(listen to the replays here, in French)

It was also the occasion to present the achievments of the FFP in 2023 :

Disability Guides and Booklet for children you can download below (in French)

Guide handicap peau_web    Guide patients handicap peau_12-23_web

ESOSP-Maladies de peau

French Network for Rare Disorders (FIMARAD) – 8th National Day

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17th  November 2023 :

In the beautiful setting of the « House of Latin America » in Paris, the French Network FIMARAD had organised its 8th National Day.

During their presentation, Patient Representatives shared their concern about the survival of patient organisations. The latter, especially small organisations such as CLI, always need to fight to achieve their aims because they lack both volunteers and funding.

The non-existence of funding from the government and from health authorities when they ask for greater participation in health activities is a crucial topic.