25th-26th November

FIMARAD (French Network for Rare Skin Disorders) Annual meeting

the results  of the different workgroups showed the improvments still needed.





23rd  November 2021

ERN-Skin Executive Committee

Taking stock of the actions and improvements achieved in 2021.


Online training courses, using the CPMS consultation platform,


setting up registries and specific activities for each thematic group were the strong points for  ERN-Skin.


4th-5th November

All ePAGS joint annual meeting with Eurordis to help each other


and improve their patient representatives’ work in the ERNs.


These two days of hard work allowed us to establish the priorities that need to be improved



6th October :  Le Dauphiné – Bons en Chablais :

On the occasion of « Pink October » and in partnership with the local council of Bons en Chablais, Cutis Laxa Internationale  held an information stall and sold various items.


11/10/21 Le dauphiné – Bons en Chablais : Pink and Blue Walk  

The health organisations of the town  were associated with the Blue Walk dedicated to elderly people and with Pink October dedicated to Breast Cancer.


Autumn 2021 : La Gazette Bonsoise :

Report of all the events organised on the occasion of « Pink October ».


26th September 2021  , 3rd, 9th and 16th October 2021



As part of Pink October, dedicated to breast cancer and as part of the Blue Walk, dedicated to elderly people,


Bons en Chablais’ local Council organised several events



that allowed CLI to collect over € 1,000. Thanks to all of you.


29th September 2021 :  Globalskin Annual Meeting.

The International Alliance of Dermatology Patients’ Organisations (IADPO), known as Globalskin, was set up in Canada.

It has grown a lot







and allows to share efforts worldwide for patients’ improved quality of life


ERN-Skin Activities

19th February : First ERN-Skin Scientific Day

114 doctors and researchers attended. Each thematic group presented the work done on the disorders they are concerned with.

For the Heritable Connective Tissue Disorders (HCTD), a study is taking place in the Netherlands to evaluate prevalence and severity of fatigue, pain, disability and global health for children and teenagers suffering from the most common HCTD.

Other topics were presented such as interconnections between nervous system and skin system, and also innovative methodologies


8th June : ERN-Skin Executive Committee

During this meeting  the agenda was very fully.

Marie-Claude Boiteux presented the epags’ work on « Patient Journeys » for each disorder concerned by ERN-Skin,

And then the Patients Satisfaction Survey, Registries,


the SPOT application,

Exchange programme,

Results of 2020

and organising, in Paris in 2022, the next Rare Skin Diseases World Congres –

these wide ranging questions showed ERN-Skin’s dynamism and how it implements concrete projects.

workgroups, training and information for Patient Representatives (ePAGS

On 18th March

« Good Practice : How to measure results, What is Quality of Life, How to build up a survey, …»

On 9th June 

ePAGS Steering Committee meeting

The first half of the year was quite busy with Eurordis

On 12th May : Annual Members meeting

on 10th June : Annual General Meeting

Setting up RDI (Rare Diseases International), editing surveys on a regular basis (Rare Barometer), helping patient representatives in the European Reference Networks (ePags), European Conference on Rare Diseases (ECRD), advocating at the European (EC) and international (UN, WHO) levels, etc…

The actions led by Eurordis have changed, change and will continue to change the quality of life and care for people living with a rare disease in Europe and worldwide.

There is no lack of work.

Globalskin (International Organisation for Skin Disorders) held two events early this year

On 25th February : Webinar : « The Power of the Patient Community in the Rare Diseases Movement » with a great presentation from Dr Ségolène Aymé, first CEO of Orphanet.

On 3rd March : Structuring the European Community for Skin Disorders inside Globalskin.