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

/in , , , /by

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

/in , , , , , /by

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).

DERMATOLOGY DAYS OF PARIS

/in , , , /by

1st, 2nd & 3rd December 2021

For the first time this year we had a stall during the Dermatology Days of Paris.

With its conferences, pharmaceutic and cosmetic laboratories stalls, Associations’ village,

 

and e-posters, there’s no need to demonstrate the richness of those days.

It was the opportunity for many exchanges with health professionals as well as with association leaders,

all concerned by dermatology.

French Health Minister’s message

/in , , /by

30th November

The 3rd Conference of the French Federation for Skin was opened by Mr Olivier Véran, French Minister of Health and Solidarity. Convinced that democracy is necessary in health issues, he recognised the quality of the FFP advocacy and the real obstacle course its 21 member organisations can face.

Watch his message here (in French) : https://www.youtube.com/watch?v=Bvm0lmixr7E

 

RARE 2030

/in , , /by

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

20 YEARS AGO ……

/in , , , /by

Cécile was diagnosed in 1992.

8 years later, she appeared for the first time on TV screens.

On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.

One month later,  we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.

Annie Moissin, who was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happened next.

Thanks to you Annie,

Thanks to Solhand of which you are now the Chair.,

One can do nothing alone, Together we are stronger, we go further.

Marie-Claude Boiteux

Chair of Cutis Laxa Internationale,  Cécile’s mother

6th CUTIS LAXA DAYS

/in , , , , , , , , /by

SAVE THE DATES

The 6th Cutis Laxa  Days will be held at the University Hospital of Ghent( Belgium)

on 14th, 15th and 16th September 2022