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

 

FIMARAD – ANNUAL MEETING

 

25th-26th November

FIMARAD (French Network for Rare Skin Disorders) Annual meeting

the results  of the different workgroups showed the improvments still needed.

 

 

 

ERN-Skin EXECUTIVE COMMITTEE

23rd  November 2021

ERN-Skin Executive Committee

Taking stock of the actions and improvements achieved in 2021.

 

Online training courses, using the CPMS consultation platform,

 

setting up registries and specific activities for each thematic group were the strong points for  ERN-Skin.

ePAGS ANNUAL MEETING

4th-5th November

All ePAGS joint annual meeting with Eurordis to help each other

 

and improve their patient representatives’ work in the ERNs.

     

These two days of hard work allowed us to establish the priorities that need to be improved

 

PINK OCTOBER AND BLUE WALK

26th September 2021  , 3rd, 9th and 16th October 2021

 

 

As part of Pink October, dedicated to breast cancer and as part of the Blue Walk, dedicated to elderly people,

         

Bons en Chablais’ local Council organised several events

             

 

that allowed CLI to collect over € 1,000. Thanks to all of you.

GLOBALSKIN ANNUAL MEETING

29th September 2021 :  Globalskin Annual Meeting.

The International Alliance of Dermatology Patients’ Organisations (IADPO), known as Globalskin, was set up in Canada.

It has grown a lot

 

 

 

 

 

 

and allows to share efforts worldwide for patients’ improved quality of life

.  

ERN-Skin Activities

19th February : First ERN-Skin Scientific Day

114 doctors and researchers attended. Each thematic group presented the work done on the disorders they are concerned with.

For the Heritable Connective Tissue Disorders (HCTD), a study is taking place in the Netherlands to evaluate prevalence and severity of fatigue, pain, disability and global health for children and teenagers suffering from the most common HCTD.

Other topics were presented such as interconnections between nervous system and skin system, and also innovative methodologies

 

8th June : ERN-Skin Executive Committee

During this meeting  the agenda was very fully.

Marie-Claude Boiteux presented the epags’ work on « Patient Journeys » for each disorder concerned by ERN-Skin,

And then the Patients Satisfaction Survey, Registries,

e-learning,

the SPOT application,

Exchange programme,

Results of 2020

and organising, in Paris in 2022, the next Rare Skin Diseases World Congres –

these wide ranging questions showed ERN-Skin’s dynamism and how it implements concrete projects.

workgroups, training and information for Patient Representatives (ePAGS

On 18th March

« Good Practice : How to measure results, What is Quality of Life, How to build up a survey, …»

On 9th June 

ePAGS Steering Committee meeting