Study about Teleexpertise in dermatology in a French region

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TeleExpertise in dermatology

Marie-Claude Boiteux led a study  with the French Federation for Skin and ARS-BFC (Regional Agency of Health in Bourgogne-Franche-Comté) and supported by A-Fluence Consulting. Compensating for desertification in dermatology, allowing patients to have rapid access to a consultation when necessary, promoting the development of the skills of general practitioners, while participating in the care pathway, while this new tool is certainly not the universal panacea, it prevents symptoms from worsening and patients from missing opportunities.

Read the study (in French)

On 14th November 2025, the Regional Agency of Health (ARS-BFC) held the first conference dedicated to new ways to practice medicine thanks to new technologies at the Convention Centre of Dijon, Bourgogne-Franche-Comté. During these Regional e-Health Days , Marie-Claude presented the first results of this study in the roundtable dedicated to « Tele-Expertise ».

see the replay (in French)

Dermatology Days of Paris

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2nd December

The 7th Conference of the French Federation for Skin (FFP) was held, as usual, in Paris Convention Center, as a preamble of the Dermatology Days of Paris (JDP). Therapeutic revolutions, Clinical Trials, Alternatives to Desertification and Integrative Health: 4 themes developed in the round table discussions. They captivated the audience and highlighted the work carried out by the FFP to improve patients’ quality of life.

3rd-6th December

Having a stand in the village of associations during the Dermatological Days of Paris (JDP) is an opportunity, every year, to increase Cutis Laxa’s visibility. It is also an opportunity to meet doctors, researchers and laboratories interested in our pathology and the projects we are carrying out. AND it’s always nice to meet up with our colleagues and friends from the associative world. This year, our visibility increased even more with our poster alongside those of doctors and researchers.

GLISSE EN COEUR

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19th November:

We had the great luck and honor to be selected to benefit from a donation given by the Endowment Fund for Children, which organizes « Glisse en Cœur » which will take place from 20 to 22 March in Le Grand Bornand (A ski resort in the French Alps).

During the inaugural evening of this festive, sportive and solidarity event, we were given a € 6,000 cheque to allow us to fund part of the travel costs for patients to attend the 7th Cutis Laxa Days. An evening full of emotions and joys with « Mercotte » (renowned French food critic) and ski champions.

St Martin’s Fair

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16th  Novembre :  

The traditional St Martin’s Fair was cold and wet, but it did not prevent us from running the stand for Cutis Laxa Internationale as long as we could for children to come and play « fishing for ducks» before selecting one of the proposed gifts.  It was a great occasion to meet with Roxanne and her parents again.

FIMARAD Annual Meeting

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3rd October :

The annual meeting of FIMARAD (French Network for Rare Skin Disorders) took stock about projects and advances in the network regarding diagnosis, therapeutics and follow-up.  The forthcoming publication of an article written together by patients and health professionals on the diagnostic odyssey is of special interest to health authorities.

We were also celebrating the network’s 10th anniversary,  an important step marked by Pr Christine Bodemer stepping back and  handing over the coordination to Pr Smaïl Hadj-Rabia.

Globalskin Europe and EADV in Paris

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16th September : GLOBALSKIN

Globalskin Europe members met in Paris about Advocacy Strategies, working on opportunities and challenges when interacting with national and/or European policy makers.

A great opportunity to meet with colleague Patient Organisation Leaders

17th-20th September : EADV

The European Academy of Dermatology-Venerology (EADV) held its annual conference in Paris.

Besides the possibility to have a booth increase the visibility of Cutis Laxa, Marie-Claude Boiteux spoke about the successes and projects led by the Patient Representatives (ePAGS) during the session dedicated to the work done in ERN-Skin.

Another Day in Bergame

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13th September 

We traveled back to Bergame for an evening of information and exchanges about what it is like to live with Cutis Laxa.

Roxanne and her parents were with us for this second Italian event with partners and authorities who had organised « Semplicemente Amici ».

Exchanges and questions were very interesting and increased understanding of what Cutis Laxa is and how it impacts patients’ lives.

 

ERN-Skin Activities

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16th January 2025 : Executive Committee (on line)

This annual meeting highlights the main aims, and projects for the coming years

2nd-3rd July 2025 : Scientific Days

The latest research on each pathology, clinical cases and the work of young researchers were presented so we would be updated on the work and projects led in our European network.

The work done by patient representatives was also honored with Marie-Claude Boiteux’s presentation of the publication « Pregnancy and Family Planning in Rare Disorders – A Heathcare Professionals survey » (see the post on this survey)

Sports Events in Charente …. and other (France)

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1st MAY in DOUZAT

The Festival Committee and the association for the “Blood Donations” had chosen us to be the beneficiaries of their annual walk. Good weather guaranteed on this first day of May and beautiful energy with all participants.

Mélissa and her father Serge, our Vice-Chair, shared their expertise by experience of living with Cutis Laxa. € 684 were raised.

1st MAY  in SIREUIL

 For many years Serge has been involved in the organisation of the “Trail du Brin d’Aillet” in his town of Sireuil.

Every year, Cutis Laxa International receives the benefits of this friendly event which welcomes many participants. The financial statement is not yet finalized.

25 th MAY in SAINT PIERRE DE CHANDIEU (France)

Roxanne’s parents once again put all their energy into running the Cutis Laxa Internationale stand during the flea market organized in their town. Information on the disease, various contacts and sale of merchandise; another great day for the benefit of CLI with nearly 170 €.

22 nd JUNE in SIREUIL 

Second annual event organized in Sireuil, where our Vice-President and his daughter Mélissa live.

Every year as usual, the triathlon offers a competition in three sports: cycling, swimming and running. Cutis Laxa International has been a long-time beneficiary of this event. The two sporting events in Sireuil meant we received €2,500 in 2024. The assessment is underway for 2025, so we do not yet know the final total.

2 RESOLUTIONS AT THE WORLD HEALTH ASSEMBLY

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IN GENEVA

21st-22ndMay 2025 :

Marie-Claude Boiteux was  there to support two important resolutions to be voted by the World Health Assembly (WHA).

The first one, presented by Globalskin, is asking for Skin Disorders to be placed as a global public health priority.

The second one, presented by Rare Disease International  for its part, asks for Rare Disorders to be placed as a global public health priority.

Cutis Laxa is a rare and skin disorder. These two resolutions, unanimously voted by WHA in its 24th May 2025 session, are then essential for our patients worldwide.

They open the path to global action plans focused on prevention, early diagnosis, efficient treatment and long term care for all people suffering from rare cutaneous disorders worldwide.

They also promote equitable access to affordable and quality services and integrate skin health in larger healthcare systems.

Healthcare professionals have not been forgotten as the resolutions also call for promoting research on skin disorders in collaboration with academic and research institutions, and for improving data collection, research and monitoring on rare disorders to develop strategies to enhance understanding, timely and confirmed early identification,including screening, diagnosis and treatment options.

We must now carry on working for those Global Action Plans to be implemented and fit with patients’ needs worldwide.