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)

The economics of delayed diagnosis in the United States:

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The EveryLife Foundation for Rare Diseases has published a new study on the economic implications of delayed diagnosis of rare diseases.

Timely diagnosis of rare diseases is key for patients to be able to access potentially life-saving treatment and improved quality of life.

Beyond the health benefits, however, delayed diagnoses also come with greater costs for health systems.

(orphanews International 2023.09.29)

Visible Disorders of the Skin

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World Skin Health Day

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14th September 2023 :

World Skin Health Day, organised by the French Society of Dermatology (SFD).

 

The first part of the day was dedicated to Skin Disability and Marie-Claude Boiteux testified during the round table on this subject.

Pr Marie BEYLOT-BARRY presented with the impact of dermatological disorders on quality of life

It also was the occasion of an interview for the SFD.

Find the replays here (in French)

Rare Revolution Magazine

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in its summer 2023 issue, Rare Revolution Magazine

published an article about Dave Jacob

Have a read

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)

ERN-Skin eNEWS

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In its June 2023 issue,

ERN-Skin eNews mentionned ePAG Advocates

attending Globalskin meeting “Elevate”

and those who were honoured with an award.

Have a read