On-Line Activities

Today, a great number of meeting, working groups, workshops,etc are on line.

Here is a list of what happened during the last 6 month of 2023 :


 9th June : Working Group “Pregnancy”                  26th June : Eurordis Patient Partnership


    28th June : Pfizer Club “Real Life Data”    28th June : Pierre Fabre “Associations’ funding”


                                           10th October : G5 Health              20th October : Webinar “Lobbying”


13th November : ePAG Steering Committee

28th November : Webinar “Connective Tissue Disorders (PXE)”


11th September and 14th December : World Skin Health Coalition



AND ALSO……. IN 2023

16th  November 2023 :

Following a first online meeting on 22nd June about Patient engagement, SpotInfoPatients, organised by BMS Laboratory, gathered together several patient representatives for a workshop on the role of decision-makers in the health sector.


9th December 2023 :

For the first time, the Fair Committee organised the Téléthon in Bons en Chablais. Cutis Laxa Internationale was present and offered children a range of activities,e.g. drawing hands to make a fresco i.e. our logo and face painting. € 3,050 were collected for the Téléthon


18th and 19th December 2023 : 

Marie-Claude Boiteux presented to children aged 11-12 at the Bons en Chablais secondary school: 200 children attended this awareness raisinf talk about skin disorders. The aim was to reduce the stigma and bullying that children with a skin disorder may face at school.

Each child was given the booklet edited by the French Federation for Skin:

« What about talking…. about skin disorders »


Dermatology Days of Paris (JDP)

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.

5th National Conference of the French Federation for Skin

5th December 2023 :

the French Federation for Skin organised its 5th National Conference,

in preparation for the Dermatology Days of Paris (JDP).

It was a great success with the opening by Senator Philippe Mouiller, Chair of the Commission for Social Affairs,

and the presence of representatives from various authorities in the field of Health.

Four round tables allowed an exchange on the future of dermatology,


democraty in health

and patients’ role in research.

(listen to the replays here, in French)

It was also the occasion to present the achievments of the FFP in 2023 :

Disability Guides and Booklet for children you can download below (in French)

Guide handicap peau_web    Guide patients handicap peau_12-23_web

ESOSP-Maladies de peau

French Network for Rare Disorders (FIMARAD) – 8th National Day

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

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.


World Skin Health Day

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)


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



25th November 2022 : The Triathlon of  Sireuil presented CLI with a cheque

24th January 2023 : Workgroup on recognising the value of the work done by volunteers

02nd February 2023 : Working on the French Local Projects for Health

14th February 2023 : Eurordis Black Pearl Awards

9th June 2023 : European Workgroup on Pregnancy and Family Planning

22nd June 2023 : BMS SpotInfoPatients  “From Patients’rights to how Patients can commit in the Health system”

26th June 2023 : Eurordis Webinar : Patient Partnership Framework in ERNs


Patient Representatives at Globalskin Meeting

1st – 2nd  June 2023

International Alliance of Dermatology Patient Organisation (IADPO-Globalskin)

held its “Elevate  Conference 2023” in Brussels

Such a pleasure to meet again face-to-face …. at last ….

Worlwide Patient Organisations were represented for two days of work and great times together.

Here are some of happy times we had before we publish the report of all our hard work.