On-Line Activities

/in , , , /by

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

/in , , , /by

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)

/in , , , , /by

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

/in , , , , /by

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,

teledermatology,

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

/in , , , /by

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.

World Skin Health Day

/in , , , /by

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)

AND ALSO…….

/in , , , /by

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

/in , , , /by

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.

 

Dermatology and Venereology Meeting 2023

/in , , , , /by

2nd & 3rd March 2023 :

The National Union of Dermatologists-Venereologists (SNDV) organised a Dermatology Venereology Meeting (RDV 2023) in “La Cité des Sciences” in Paris.

 

The French Federation for Skin (FFP) stall was held by Hélène Raynal, the Secretary.

 

During the roundtable « Information and awareness : Prevention a priority, at last », Marie-Claude Boiteux spoke as patients’ representative and brought forward patients’ contribution to further raise awareness.

 

These two days ended beautifully with a cabaret show offered by the SNDV.

ERN-Skin ANNUAL BOARD MEETING

/in , , , /by

13th January 2023 :

ERN-Skin Board Meeting.

2023 is a transitional year for all ERNs.

The first 5-year period ended in 2022. 2023 will therefore be a transition and evaluation year before a new validation by the EU for a new 5-year period to 2028.

 

The meeting was an opportunity to take stock of what was done and present future projects.