The French Federation for SKIN (FFP) is working hard

Since the beginning of the year, Georges Martinho, FFP General Delegate, led several projects at the double all showing positive and very promissing results :

  • The FFP plea was published in March. It gathers together the difficulties, needs and proposals of thousands of persons suffering from skin diseases in France, wether these diseases are rare or not. Delivered to all Health Authorities and elected Representatives acrossthe country, its aims are : long-term improvment of quality of life for skin patients ; advocacy against social and local inequalities ; improved support of care journeys ; getting patients’ expertise recognised. The first reactions are very positive.

 

  • National Office of Solidarity for Autonomy (CNSA) and Local Houses for Disabled People (MDPH) working towards the recognition of a « Skin Disability » and adapting the administrative steps to the reality and specificities of dermatologic diseases.
  • Rallying Members of Parliament : After sending the petition, several meetings have taken place with Members of Parliament and Senators. The working areas fo the Members of Parliament and the FFP include meeting patients to increas knowledge of their needs, bringing the issues to the parliamentary debate and proposing amendments to legislation.
  • Taking par in the inter-associative task-force of pharmaceutical industries : Following the recommendations published by the European Commission on how to improve the information on health products, a survey and a meeting allowed members of the FFP to share their point of view and take part in this work.
  • Educational aids for children and teenagers : These aids have an informative and educational aim illustrated by concrete situations. We will soon start working with illustrators, various tools have been mentioned (books, videos,etc). The first two aids, for 6-11 year olds and 12-18 year olds, are taking shape and should be edited by the end of this year.

 

The FFP is doing great and has real concrete results.

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

The first half of the year was quite busy with Eurordis

On 12th May : Annual Members meeting

on 10th June : Annual General Meeting

Setting up RDI (Rare Diseases International), editing surveys on a regular basis (Rare Barometer), helping patient representatives in the European Reference Networks (ePags), European Conference on Rare Diseases (ECRD), advocating at the European (EC) and international (UN, WHO) levels, etc…

The actions led by Eurordis have changed, change and will continue to change the quality of life and care for people living with a rare disease in Europe and worldwide.

There is no lack of work.

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

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

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

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

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

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)

Painting contest

1st prize in the 14-18 age range.

The drawing competititon “Story of my skin” organised by the René Touraine Fondation received high quality works

Living with a Rare Disorder in France

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

You can read here the whole study (in French)