11th  April :  The Annual General Meeting of France Assos Santé – Auvergne-Rhône-Alpes ( local federation of health organsiations) was held in Lyon. It was the opportunity to meet our friend Roger Picard, and many other members of the Federation.

29th November : We received the cheque from the  Triathlon of Sireuil


09th December : We met the Gospel Choir… some projects for 2020…


03rd  December  First Conference on Skin and Annual Meeting of the French Federation of Skin during the Dermatology Days of Paris.


The presentation of Pr Andrew Y Finlay from Cardiff  University highlighted the questionnaire on Quality of Life for patients with skin disorders, may they be rare or not.

This questionnaire should be proposed to patients by all dermatologists.

After this Patient Organisations took stock of their activities and difficulties.


26 – 27th November  Leadership School organised by Eurordis.

After several online  courses throughout the year, patient representatives in the ERNs met in Barcelone for the last two training days in Leadership.

We will be issued with a Diploma at the end of the course.

Even if the Catalan setting tasted like summer vacation, it was two days of real and hard work during which we increased our natural capacities and skills to become more efficient when interacting with health professionals in the ERNs.



The aim of this Leadership school has been reached as we gained the competences required to improve the way we bring patients’ voice forward where it matters most.


ERN-Skin Board Meeting 2019

ERN-Skin Board Meeting in Necker Hospital in Paris.

Two days of intense work, whether in plenary session or in thematic groups.


Patient representatives could express their wishes and dialogue with doctors and researchers to establish together the roadmap for the coming years.

There is a huge amount of work to do but our will and synergy will allow diagnosis, care and treatment for patients to improve at the European Union level


FANTASIA PARK July and August 2019

26th Juillet : We were very pleased to have a stand in Fantasia Park in Annemasse during Musical’Eté festival.

First of the two dates we were given, this evening has been a great success.

We did not have any sausages or any French fry left at the end of the concert.

The storm then surprised everyone and we had to wait, soaked, until the weather got better before we were able to clean and tidy the stand.

€480 in takings, thanks to the volunteers who were there to help us.

We look forward to the 30th August for another great evening for the benefit of CLI.

    30th August  : Another great evening


The Annual General meeting of Solhand followed by the Annual Conference was held in Paris.

What a pleasure to meet with our friends, Chairs of other organisations, to share this important annual moment, to share our successes and difficulties and to learn, more and again, about each one’s journey.

A delicious diner, Camille’s birthday and an eclectic concert, from rock and roll to gospel and bel canto,   ended the day with great joy.

meeting ptites etoiles


Once again this year, « Our Little Stars » gathered together the local organisations dedicated to suffering and disabled children.


Next to Solhand’s stand, we appreciated this convivial and festive day in Cruseilles welcoming organisations,

but also professional partners who gave part of their benefits to be shared between all the organisations on the day.

This is why we received €150 from « Our Little Stars ».

Added to the €120 from our sales, the day was a great success and ended with a beautiful release of balloons.

Rare Disease International Day 2019

Rare Disease International Day 2019

Over 100 countries took part.

Here, in Haute-Savoie (France) we partnered with 3 other organisations for rare disorders. As our main aim was to inform on rare disorders, we had a stand in the hall of the Hospital of Sallanches.




But we also involved confectioners and patissiers from our beautiful area. This is how Mr Challamel, patissier in Douvaine, gave €250  from his sale of macarons on the day.


And also in 2018………

19th November 2018 in Sireuil (Charente – France), the Triathlon handed over a cheque for €900 to CLI. Many thanks to all the volunteers.

28th November 2018 in Grenoble (Isère – France), Preview  of the Film  « Announcing Disabilities »

8th December 2018  Telethon, The Walk for Rare Disorders in Paris (France) had been cancelled  for security reasons, but Sireuil (Charente – France) had its « Color-Run


8th December 2018 in Annecy (Haute-Savoie, France) Show and Sale of Malakof-Médéric

Paris Dermatological Days (JDP)

13th December 2018 in Paris, we ended the year on a high note, with Paris Dermatological Days (JDP).

It was a great opportunity for the French Federation for Skin to go back to work with a new Board of Directors,

new Committee

and new projects that are common to all dermatological diseases.

A great energy to lead us and carry patients’ voice high and strong.