UKRAINE

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As war still goes on, Ukraine faces a humanitarian crisis and rare disease patients are the most affected by the conflict. 2 million Ukrainians have a rare disease and face the sizeable challenge of meeting the complex medical needs on their own.

The EU, Eurordis, ERNs, Orphanet and all the members of the European rare diseases sector joined forces and organized everything to give displaced Ukrainian patients the best help they could: list of medical centres abroad, safe transfer of patients across Europe, access to medicines and medical equipment in Ukraine despite the destruction of vital infrastructures, list of rare disease resources for refugees and displaced persons, and much more, see

https://www.standwithukraine.how/

Other Events in 2022

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1st February: Pharmaceuticals Seminar

10th April : Our Little Stars” stall and entertainment

6th July : Pierre Fabre Contest, Marie-Claude Boiteux was a member of the Grand Jury that awarded the Price of the Best Patient-Centered project presented by the international chapters of the Pierre Fabre Group.

30th September and  1st October :  CHAM 2022 gathered together all stakeholders of tomorrow’s health : Politicians, Health Professionals, Institutional bodies, Pharma Industries and Patient Organisations.

Rare and I live with it

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Cécile was interviewed by Handicap.fr for their new podcast

“Rare and I live with it”.

You can listen to it (in French):

on google

Or read the abstract:

here :

CLI at the Dermatology Days of Paris

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29th November – 3rd December 2022 :

Dermatology Days of Paris (JDP).

Pr Dupin opened the  « Associations’ Village ».

This year, CLI not only had a  stall,

but we also took part in « Canal JDP » for a cross-interview with Pr Ludovic Martin « Cutis Laxa : Hope for the patients ».

Watch the video here

And our poster was also part of the official exhibition.

4th Conference of the French Federation for Skin (Report)

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29th November 2022 :

4th Conference of the FFP on the theme « Health Journey in Dermatology »

Pr Dupin, Chair of the French Society of Dermatology (SFD) and Pr Beylot-Barry, presented the challenges and prospects, further developped by Dr Sulimovic, Chair of the National Union of Dermatologists-Venereologists (SNDV), specifically regarding access to dermatologists in town (rather than in hospital). For this part, Pr Bodemer focused on issues regarding Paediatric Dermatology.

 

We ended the morning with a roundtable dedicated to “Holistic care of the Patient”.

We spent the afternoon in workshops to reflect on the synthesis of local meetings organised around the review of the Local Projects for Health.  A great, rich, participative and interesting day, as speakers and attendees said in their comments.

And the next day we opened the FFP Stall for the Paris Dermatology Days

 

FIMARAD ANNUAL METING

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24th & 25th November 2022 :

National and Scientific Days of the FIMARAD network for rare skin disorders.

 

Besides the important progress made by the network’s members, together with patient representatives in the workgroups,

it was the opportunity to strengthen the collaboration between FIMARAD and the French Federation for Skin (FFP).

Cutis Laxa Videos ……… N°8 ……. last one

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Here is the 8th …..and last…..of our videos

“Advice and support : “we are here !”” …  this is my conclusion

and also how we, parents, can help our “different” children.

I hope you enjoyed those videos.

you can find the 8 videos on the playlist :

 

and don’t forget you can have subtittles in your own language

Cutis Laxa Videos …. N°6

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Let’s watch the 6th episode of our videos about Cutis Laxa.

Today :  the difficulties with the administration (in France but maybe same issues in other countries) and how CL patients must sometimes struggle to get their rights respected.

 and don’t forget you can get subtittles in your own language:

 

Cutis Laxa Videos …… N°5

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Today’s topic is our organisation “Cutis Laxa Internationale” celebrating its 20th anniversary on 11th November 2021

 

and how many CL patients are there worldwide as of today (April 2021)

Remember you can get subtittles in your own language

Cutis Laxa Videos …… N°4

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Today I talk about the impact of the disorder in adulthood: love life, finding a job, etc.

 

and you can get subtittles in your own language :