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 :

The French Federation for Skin published its plea

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The French Federation for skin is publishing its plea aiming to :

  • Improve skin patients’ quality of life on a long term basis ;
  • Fight against social and local inequalities ;
  • Ease health journeys and carers’ work ;
  • Offer a global care respecting patients’ needs
  • Get patients’ expertise and role in the healthcare system recognised

read the plea here ( in French)

Living with a Rare Disorder in France

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Orphanet has just edited its new study about rare disorders in France.

You can read here the whole study (in French)

RARE 2030

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On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis held the “Rare 2030 Final Policy Conference”.

Over 1100 participants representing all stakeholders groups of the rare disease community took part in this event, learning, exchanging and celebrating together.

Find here the Rare 2030 Recommandations

Have a look at Rare 2030 website

e-Book edited by the French Federation for Skin (FFP)

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FFP has just issues its first e-book on :

“Cutaneous disorders and psychology”

The French Federation for Skin helps you and shares a few pages on patients’ psychological situation as well as advice and analysis from our psychologists. It aims to give some points to help live a better daily life with the disorder.

Read (pdf in French)