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)

GLOBAL RESEARCH ON THE IMPACT OF DERMATOLOGICAL DISEASES (GRIDD)

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If you are a dermatology patient THIS IS VERY IMPORTANT

You are invited to take the GRIDD Survey now and share it with anyone who can take part!

On June 5, 2023, GlobalSkin, in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.

Launched with the aim of engaging 10,000 participants, the GRIDD Study takes 10-20 minutes to complete and is accessible in 17 languages.

The data collected will help to validate the need for improved care, better treatment options, and more affordable medicine for dermatology patients globally.

The GRIDD Study is open until September 28, 2023.

The Cutis Laxa “Patient Journey”

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The “Patient Journey” seeks to identify the needs that are
specific to individual syndromes. To achieve this, patient
representatives completed a mapping exercise of the needs
of each rare inherited syndrome they represent, across the
different stages of the Patient Journey.

This is the definition of the Patient Journey as mentioned in this article published in 2019.

This is an important work and we established the Cutis Laxa “Patient Journey”.

Cutis Laxa being such a complex disorder, with several subtypes and various associated symptoms, we could not have just one Cutis Laxa “Patient Journey”. We gathered together associated symptoms of the different subtypes and ended with two groups of subtypes.

Here are the results for the two “Patient Journeys” for Cutis Laxa patients:

Cutis Laxa with lung and arteries symptoms

Cutis Laxa with neuro and skeleton symptoms

“Patient Education Program (PEP)”

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20th & 21st April 2023,

ERN-Skin organised its Scientific Days on the topic: “Patient Education Program (PEP)”. As defined by the OMS-Europe report  it « aims to help patients gain or keep the competencies they need in order to better manage their life with a chronic disorder. It is an integral part, and on a permanent basis,, of patient care ». Since 2009, PEP has been legally defined in France. The long French experience in this field could be an example to implement PEP in other European countries.

« Taking stock of the dermatology care in France »

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On 28th March,

the National Union of Dermatologists Venereologists (SNDV) published a press release about « Taking stock of the dermatology care in France » : unlike generally accepted ideas, amplified by the distorting mirror of social medias, medical activities of private dermatologists are above all clinical and surgical. Thus, over 2,500,000 medical treatments are made each year by 3,600 dermatologists, of which 2,700 are private, according to statistics published by the National Board of Health Insurance (CNAM). These medical treatments mostly concern the care of skin cancers and chronic inflammation skin disorders.