VDS (Visible Disorders of the Skin) Program

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This program has been set up by the “Patient Relationship” Department of  Pierre Fabre Laboratories.

 

Living with a visible disorder of the skin on your face and/or hands, means been continuously under the gaze of others, embarrassment and reactions that are sometimes disconcerting and even hurtful from people just passing by or met daily.

The gaze, even covert, can have unsuspected impacts on the life of people living with a visible disorder of the skin.

Let’s become aware of the power of a gaze that, if it can damage the daily life, can also illuminate it!

Listen to the podcast with patients’ interviews and try the « e-motion experience », a unique moment « in the skin of a patient ».

Enjoy visiting its page, in French and/or English :  https://www.changer-de-regard.com/

Another booklet recently published

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This is for schools and communities to welcome a child with a skin disorder.

It lists the consequences the disorder may have, the specific needs, the possible or necessary layouts, as well as the role and place of the education team.

You can download it from Fimarad website (www.fimarad.org)

Skin Disability Guides

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After two years of collaborative work with patients, medical professionals, medico-social professionals and the National Office of Solidarity for Autonomy (CNSA), here is a concrete result of the work led by the FFP.

Because the skin is the biggest organ of our body and to understand the impacts of skin disorders, the Skin Disability Guides provide the urgent keys to evaluate the disabilities patients are facing.

The Patient Guide help them correctly fill the needed forms to assert their rights if it is possible in their country.

These documents are  downloadable hereunder (in French).

 

       

“What about talking…….about skin Disorders ? “

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What about talking … about skin disorders ? :

The French Federation for Skin (FFP) has just published a booklet for children (In French). Fruit of work with children with or without a skin disorder, with an adapted design made by the organisation « The Little Citizens », it perfectly answers the children’s questions about skin disorders and aims to get rid of bullying for those who suffer from those disorders.

You can download it here (in French)

World Skin Health Coalition (WHSC)

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WHSC gathers together all stakeholders concerned with the health of the skin : patient organisations, health professionals, medical and research societies and industrial partners, to strengthen our collective power in order to raise awareness on the global impact of dermatological disorders and conditions and put them at the top of health policies’ agendas. We are members of the coalition.

Virginie BROS-FACER, new CEO of Eurordis

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In September 2023, Yann Le Cam announced his decision to retire from the position of CEO of Eurordis.  Virginie Bros-Facer will then take over in March 2024. She had previously worked with Eurordis as Scientific Director before joining various organisations where she worked in the field of research and patient engagement for rare disorders.

In her own words, she is delighted to be back in Eurordis.

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 »

 

Reaffirming at all levels the commitment to and participation of users

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In an article published on 12th December 2023 on the occasion of the National Health Strategy, the High Anthority for Health identified four topics which require much effort and progress :

  • Promoting the commitment to and the participation of users with health professionals ;
  • Effectiveness of individual rights recognised in the laws of 2002 and those adopted afterwards;
  • Representation of users by agreed organisations ;
  • Reinforcement of users‘ knowledge.

 

For us, CLI, these four topics, to which must be added the lack of volunteers and financial means, are the main topics to work on during the coming years if we want to protect the survival of all voluntary organisations.

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