11th-12th December
Members of ERN-Skin got together for the annual Board Meeting that takes stock of what was done over the year and future projects.
Cutis Laxa was honored thanks to the method of classification established with AI that allows a reduction the diagnosis odyssey. This new classification is more detailed in the page dedicated to the 7th Cutis Laxa Days.
The group of patient representatives (ePAGS) was extended with new members in attendance.
8th October :
Doctissimo press release :
« Skin Diseases – A public health issue that is still underestimated, a collective to make things happen »
8th December :
Le Monde :
« The rise of cosmetic surgery accentuates the lack of dermatologists»
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.
Have a look at the JDP2025 retrospective were Marie-Claude Boiteux talks about the Associations’ village (at 1:04)
On 21st November 2025,
the town of Sireuil handed a €2,000 cheque thanks to the profits made by
the Triathlon and the Brin d’Aillet run
and the newspaper “Charente Libre” reported on that event
Together for Rare Diseases (Together4RD) has published a report on the use of public-private partnerships (PPPs) in rare disease research, and the role ERNs have to play in this context in order to boost European competitiveness and drive change for the rare disease community. The report was developed following a high-level conference hosted by MEPs Stine Bosse (Renew Europe, Denmark) and András Kulja (EPP, Hungary), in collaboration with Together4RD, at the European Parliament on 24 September.
Drawing on the discussions held during the conference, the report puts forward a number of action items to facilitate ERN-industry collaboration, thereby accelerating innovation and improving the availability of treatments and care for patients. Some of the actions outlined in the report are:
By combining the expertise of ERNs, the capabilities and resources of industry, and the input of patient communities, this type of PPP has the potential to deliver concrete change and improved health outcomes for all Europeans living with a rare disease. (© Orphanews 2025.11.25)
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.
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.
They all are in line with the recent adoption of the World Health Assembly (WHA)’s Resolution on Rare Diseases, which recognises the global challenges faced by PLWRD. (© Orphanews 2025.10.06)
Malaysia
This is the nation’s first ever strategy for rare diseases. It aims to address critical gaps and strengthen the delivery of comprehensive healthcare solutions for PLWRD in Malaysia. The policy defines a disease as rare if it affects fewer than 1 in 4,000 people, and identifies 9 key pillars of action to improve rare disease care, diagnosis and awareness
Ireland
The Irish Department of Health unveiled their National Rare Disease Strategy 2025-2030. This strategy builds on the foundation of the previous National Rare Diseases Plan for Ireland 2014-2018, and addresses issues encountered by PLWRD throughout all stages of life. The result of multi-stakeholder collaboration between patients, clinicians, researchers, and government representatives, the strategy puts forward 11 recommendations to reinforce rare disease care and awareness in Ireland.
Luxembourg
The Ministry of Health adopted the country’s second national plan for rare diseases, the “Plan National Maladies Rares Luxembourg” 2025-2029 (PNMRL). This plan represents a continuation of the first national plan, which was in place from 2018 to 2023. It aims to promote a reinforced, coordinated healthcare system for PLWRD in Luxembourg. It takes a holistic, person-centred approach to the challenges facing the rare disease community across five thematic areas.
People living with a rare disease (PLWRD) often experience significant psychological burden, that results from a number of factors including physical pain, reduced income and increased medical expenses, and reduced social interactions. In addition, chronic physical conditions, as in most rare diseases, often occur alongside depression which can further exacerbate other mental health effects of the disease itself. In order to address this issue, a study was recently published in Intractable & Rare Diseases Research that investigates the effects of a mindfulness-based cognitive behavioural group therapy program for patients with a rare disease and deep depression.
The program described in the article consisted of three monthly sessions, each lasting 2 hours. Overseen by a clinical psychologist, it was designed to reduce psychological stress and improve quality of life in People Living With a Rare Disorder. (©Orphanews international 2025.10.06)
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.
