AND ALSO…….

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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

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Patient Representatives at Globalskin Meeting

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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

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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

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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.

GOOD-BYE

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Time to go home….. It is so hard to leave each other.

Longing to meet again ……. Roll on the 7th Days …

Breaks and Fun Times

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SYMPOSIUM LUNCH BREAK

CHILDREN GAMES

BOAT TOUR

Diner Times

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PIZZAS

CHINESE WOK

FESTIVE DINER

 

Prof. Dr. Christine Bodemer, MD (Paris, France) : Embedding CL in ERN Skin & ERN-Ithaca

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The European Reference Networks (ERNs) set up by the European Commission allow a collaboration between all health professionals concerned by a specific disorder throughout Europe.

They also allow the discussion of more difficult cases, online, thanks to the Clinical Patient Management System (CPMS) plateform.

16th September 2022 – Collaboration in Recherche

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The aim of this event dedicated to research was to set up collaborative research among researchers interested in Cutis Laxa, worldwide. It was also to ask patients to work together with researchers to let them know what main topics they would be interested in.

Pr Callewaert presented the main challenges, strength and weaknesses Cutis Laxa represents. Then Dr Jens Detollenaere talked about how patients’ participation is organised as partnership in research in Belgium

After working in 2 groups (clinic and research, and patients) with those interested in taking part in the research collaboration, we reported our work in a general session.

We ended this working day on research collaboration with the decision to set up an International Research Consortium on Elastic Fibers including a Patient Advisory Board. What a Success !!!!