CLI at the Dermatology Days of Paris

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)

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

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).

National Events in France in 2022

3rd February:

Workshop with the National Service for Solidarity and Autonomy and the French Federation for Skin on Support Files given to the Local Houses for Disabled People for patients to assert their rights.

 

8thFebruary :

Official hearing by the National Conference for Health on the occasion of the 20th anniversary of Democracy in Health. A lot still has to be done for small organisations such as ours to continue existing and working for improvements in patients’ quality of life.

 

9th February :

Associations member of FIMARAD (French Network for Rare Skin Disorders) worked on the concept of Expert by Expertise, where the Patient is rightly considered an Expert.

International Events in 2022

IADPO-GLOBALSKIN (International Alliance of Dermatology Patients Organisations)

27th January : Meeting of  Globalskin Europe

18th May :  Presentation of the first results of the international survey on the burden of dermatology disorders.

RDI, Rare Disease International :

28th February : International Rare Diseases Day

15th June : Annual General Meeting

European Events in 2022

ERN-Skin :

14thJanuary : Annual Meeting

10th March: Scientific Day

27th September : Webinar of the Thematic group concerned with Cutis Laxa

AMEQUIS :

18th January : last meeting to establish the criteria on which ERNs will be re-assessed and 15th June : final document.

 

EPAG :

21st January meeting of the Organising Committee and  31st January Good Practice webinar

 

ECRD :

27th to 30thJune European Conference on Rare Disorders

EURORDIS

18th May Annual General Meeting

1st WORLD CONGRESS ON RARE SKIN DISORDERS

The 1st WCRSD (First International Congress on Rare Skin Disorders) was held in Paris

7th to 9th June 2022.

Organised by ERN-Skin, René Touraine Foundation, Fimarad as well as Patients Representatives and Globalskin for the Patient Session, it was a huge success !!

With a successful Patient Forum,

Presentation on Cutis Laxa new classification,

It was also the occasion to meet with other organisations.

AND ALSO …. IN 2021

29th September 2021

Webinar on e-Health with the French Skin Federation

 

 

1st October  2021

Bersot Estate Agency gave us a € 300 chéque. They had proposed to their clients to make a donation to the organisation they had chosen for each transaction. A huge thank you to them.

 

 

14th October 2021

Webinar : Integration of ERNs in National Health Systems – Care Pathways

 

 

 

26th – 27th October 2021

AMEQUIS workshop. The global aim was to simplify and improve the revalidation steps for ERNs when applying for reassessment.

 

 

 

DERMATOLOGY DAYS OF PARIS

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 FEDERATION FOR SKIN – CONFERENCE AND ANNUAL MEETING

30th November 2021

The 3rd Conference of the French Federation for Skin (FFP) was opened by Mr Olivier Véran, French Minister of Health and Solidarity.

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

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.

  

FFP represents more than 20 million patients. this third  conference was an  undeniable success in bringing together high quality speakers : health Professionnals and Institutions.

 

The work of the FFP is recognised by all stakeholders in the field of dermatology.

 

After the Conference, the Annual General Meeting was held and the annual report brought to light the many achievements in 2021. The FFP member organisations elected the new board of Directors and its new Chair : Marie-Claude Boiteux