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/

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

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.

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.

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.

ERN-Skin Board Meeting

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6th Novembre 2023 :

ERN-Skin Annual Board Meeting.

It really was a great pleasure to meet again in person with all members of  ERN-Skin.

 Whether we are Health professionnals, doctors, researchers or patient representatives, a real common will drives us : improving Skin Patients’ quality of life throughout Europe.

The new roadmap for the coming years (2023-2027) has many signposts along the way, whether for health professionnals or  Patients’ representatives

The first results of the Patient Satisfaction Survey are being analysed.

 

Psychosocial needs of children with rare diseases and their families

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A new article has been published in the Orphanet Journal of Rare Diseases which explores the day-to-day experiences of children living with rare diseases and their parents, as well as their needs and current pathways to psychosocial supports.

Five main themes : daily life with an RD; experiences with the health care system; psychosocial support; difficulties and barriers; and improvements for patient-oriented support were addressed during semi-structured interviews with young people with RD and parents of children with RD.

Overall, diagnostic delays and a lack of physician education, as well as time, socio-legal, and organisational problems all caused stress and negatively affected mental wellbeing.

Despite recent advances in awareness and care, RD still represent a great challenge for all those affected by them and their families.

(Orphanews International 2023.10.16)

Japan: Recent advances in rare skin diseases

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A new article has been published in the Keio Journal of Medicine providing an overview of recent advances in clinical research on rare hereditary skin diseases in Japan.

It shows efforts to uncover their pathogeneses, potential new treatment methods, current progress on establishing clinical practice guidelines and activities which have been undertaken to raise public awareness.

Collecting scientific evidence also aims to inform the creation and revision of evidence-based Clinical Practice Guidelines. (orphanews international 2023.07.26)