The Heroes’ Run

/in , , /by

18th MAY in LYON (France)

A great festive moment in the heart of the city of Lyon, the “Heroes’ Race” took over the Parc Gerland.

This event brings together volunteers from many associations, each one responsible for collecting donations for their association from their relatives, families, friends and colleagues.

   We had 7 “Heroes”: Roxanne’s father, mother, aunt and great-aunt, Cécile’s husband and sister-in-law, as well as one of our researchers in Lyon, Professor Romain Debret. They all worked hard to raise more than €5,700. A thousand BRAVOS to all of them.

To top it off, thanks to Roxanne’s mom and the fabulous costumes she made and brought, we won the Best Costume Award: an extra €500 in our kitty.

 

A joyful, friendly day, full of laughter, joy, shared happiness and a picnic under the cool of the trees.

 

LA PASTOURELLE

/in , , /by

8th MAY in SALERS (France)

 For its 25th edition, La Pastourelle, a renowned sporting event bringing together more than 6000 participants around trail and mountain bike events and a hike, chose Cutis Laxa International to be honored

During the 3 days dedicated to mountain sports, not only did we have a stand at our disposal with information about Cutis Laxa, but also, an exceptional race “The Salers Night Fever” was dedicated to us.

On the stand, in the nighttime atmosphere of the streets of the magnificent village of Salers and during the races among the extinct volcanos of the Massif Central, Roxanne and her family as well as Marie-Claude Boiteux and Cécile were able to make Cutis Laxa known and show that despite the disease, life can be rich and beautiful.

A cheque for €2,500 was given to us and we sold €360 worth of merchandise on the stand

 

 

3rd MAI à BERGAME (ItalY)

/in , , /by

Thanks to Roberto Trapletti, several towns in the Region of Bergame mobilized for Daniel, suffering from Cutis Laxa, to organize events to the benefit of Cutis Laxa Internationale.

The Chair, Marie-Claude Boiteux together with Cécile travelled to Bergame to support this great initiative and answer  jounalists’ questions for the local television channel.

It was a beautiful first event and a strong commitment from the region’s authorities that generated € 5,900 in grants and donations.

Globalskin Conference

/in , , /by

23rd-26th April 2025 :

Globalskin had chosen Prague to held its biannual conference.

It is always a great pleasure to meet again with patient representatives colleagues coming from every part of the world.

Three days of  work, exchange, reflections and building projects united us and gave us the necessary energy to advocate for patients.

 

This year had a special taste as Marie-Claude Boiteux received the collaboration award during the closing diner.

It is a great recognition of the work she is doing for Cutis Laxa patients and for all those who are concerned by a rare skin disorder.

Stakeholders’ National Conference of Dermatology

/in , , , /by

3rd April 2025 :

Patient organisations representatives met up in Paris to take part in the Stakeholders’ National Conference of Dermatology organised by the French Society of Dermatology (SFD).

Dermatology is facing many issues (i.e. lack of young dermatologists) and all stakeholders must work together, hand in hand, to find solutions for patients to receive the care they deserve.

SPORTSMEN AND SPORTSWOMEN SUPPORT US

/in , , /by

2025 will be a great year !

We are supported by big sports events

8th-10th MAY

Trailers and cyclers will give us all their efforts during La Pastourelle

18th MAY

Runners will raise funds for us in Lyon during  La Course des Héros

22nd JUNE

The Triathlon de Sireuil is, once again, supporting Cutis laxa Internationale

Many Thanks to all the organisers, volunteers, sportsmen and sportswomen who raise funds and awareness for the Cutis Laxa patients.

Dermatology-Venerology Meeting

/in , , , /by

30th-31st  January 2025 :

Dermatology-Venerology Meeting organised in Paris by the National Union of Dermatologists-Venerologists (SNVD).

It gave CLI the opportunity to speak during a round table dedicated to partnerships between patient organisations and SNDV.

And to answer participants’ questions

Dermatology Days of Paris

/in , , , /by

03rd-06th December 2024

Dermatology Days of Paris (JDP)

Thanks to our stand during the JDP, I have had the great joy, more than 30 years later, to see again Dr Karim CHERTI.

At that time, he was a junior doctor in the genodermatosis unit at Hôpital Saint Louis in Paris. He was a member of the team who diagnosed my daughter, Cécile, and wrote his thesis on her case.

It was a very moving moment for both of us.

6th Conference of the French Federation for Skin (FFP)

/in , , , /by

03rd December 2024

6th Conference of the French Federation for Skin (FFP)

This event is unmissable: the opportunity to gather together, evoke the achievements of the year and explore future projects in round-tables and interactive workshops.

It was also the last time I was leading the FFP Conference as my 3 years mandate chairing the FFP has come to its end.

Patient Forum

/in , , , /by

26th November 2024

Pfizer Patient Forum

Marie-Claude Boiteux participated in a roundtable on  « Minimising obstacles and maximizing impact: key learnings from pilot projects and advice for action”.