Survey ALL

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Carried out between January and April 2023, together with EMMA Society, this international survey evaluates the prevalence (number of cases among a defined population), impacts, behaviours and needs of different skins and skin disorders depending on geographical areas, countries or complexion.

It included 50,552 participants (adults ≥16 yo) in 20 countries (China, USA, Brazil, India, Australia, France, Italy, Canada, Denmark, Germany, Israel, Kenya, Mexico, Poland, Portugal, Senegal, South Africa, South Korea, Spain and United Arab Emirates) distributed across the 5 continents.

It is therefore the biggest private database in  dermo-cosmetics.

Take a look at all the results on this page : https://www.changer-de-regard.com/#all

 

KAPCODE Study

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Marie-Claude Boiteux took part in writing a new scientific publication : « Testimonies, feelings, complaints and emotional experiences of patients suffering from dermatosis on social medias : French Infodemiologic* Study of patients’ uncensored words ».

Steming from a work led by Pierre Fabre Dermo-Cosmetic & Personal Care together with the society Kap Code specialised in the analysis of real-life data in health who listened for 3 years to patients’ uncensored words as publicly expressed on social media.

The internet offers a forum to those for whom the skin disorder bridles their social relationships. Through social media, they share their real-life experience and reveal what they do not say – because they do not dare to or because of lack of time – in medical consultations: Self-image, physical and psychological impacts, therapeutic roving, etc.

Collected, analysed and related verbatims, this work shows the emergency and need to « change our gaze on visible disorders of the skin”.  https://www.changer-de-regard.com/#ecoute-reseaux

 

*Infodemiology was defined by Gunther Eysenbach in the early 2000s as information epidemiology.It is an area of science research focused on scanning the internet for user-contributed health-related content, with the ultimate goal of improving public health. It is also defined as the science of mitigating public health problems resulting from an infodemic.

 

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 »