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).

 

       

Social Media Listening

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An article has just been published in JEADV :

Patients’ testimonies, feelings, complaints and emotional experiences with dermatoses on open social media:

The French infodemiologic patient’s free speech study

“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)

Dave Jacob’s interview on Grey Genetics Patient Stories Podcast

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Dave Jacob, founder fo ThinkGenetic, featured on the Grey Genetics Patient Stories Podcast on 30th January 2024.

He recounts his diagnostic journey, which ultimately led to a diagnosis of Cutis Laxa.

He shares how his personal experience as a rare disease patient inspired the inception of both ThinkGenetic Inc. and ThinkGenetic Foundation.

Give a listen

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.

CONECT Project

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CONECT Project (Cardio-Ocular NEtwork Connective Tissue)

gathers together several organisations dedicated to connective tissue rare disorders with cardiovascular involvement : Arterial Tortuosity Syndrome, Marfan Syndrome, Ehlers-Danlos Syndrome, Cutis Laxa, Loeys-Dietz Syndrome, etc… Initiated by the American Patient Organisation for Arterial Tortuosity (ATOF-ATS), it aims to build a collaboration to evaluate the common issues in a population with similar patients, to inform on possible treatments that are not widely known, to ensure that patients have a minimum of scientific and clinical knowledge on their disorder to be able to give their informed consent to take part in research programmes and to improve their quality of life. Online webinars have already been set up, for patients as well as health professionnals.

Welcome

NEW MEMBERS

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555

That’s the number of patients who joined CLI, with the new members  Kim, Tigui-Jamilah, Clare, Ali et Yassin, Isla, Marie-Astrid and her brother, Soumaya, Jonas et Goundoba.

Welcome to all of you. We are happy you found and joined us.

Our Big Cutis Laxa Family is here to help you, support you and answer your questions.