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)

RARE 2030

On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis held the “Rare 2030 Final Policy Conference”.

Over 1100 participants representing all stakeholders groups of the rare disease community took part in this event, learning, exchanging and celebrating together.

Find here the Rare 2030 Recommandations

Have a look at Rare 2030 website

Welcome

New Members, News from the Families

Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne, Richelle and 4 members of her family, James and Charles, Ehran, Lisa, Emam are new members of the big Cutis Laxa family.

 

We are now 466 patients and their families, coming from all parts of the world. We are united and we get our voices heard. We support each other. And as the Rare Disease Day motto declares: « We are RARE, we are STRONG, we are PROUD

Vaccination advices

A vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simuA vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simultaneously.

There is no reason for people with rare disease to avoid vaccination against SARS-CoV-2. Vaccination is important to protect the whole population as well as patients with rare skin diseases, although ultimately it remains the personal choice of each individual.

We particularly encourage vaccination for patients with disorders which may affect the immune system making complications of COVID-19. The currently available “mRNA vaccines” are dead vaccines and should not pose a risk to patients with immune deficiency and those undergoing immunosuppressive treatment.

Depending on the availability of other types of vaccines, in the future, new recommendations may be necessary.

Mendelian connective tissue disorders

There is no contraindication to vaccination against SARS-CoV-2 for patients with Monogenic connective tissue disorders.

Vaccination against COVID19 is important for the whole population including patients with connective tissue disorders. Although vaccination remains the patient’s choice, as it is the own choice for any citizen.

It could be strongly recommended for patients with connective tissue disorders, particularly for those with bad general condition, severe vascular and/or important lung involvement.

For detailed advice, don’t hesitate to contact the specialist who ensures your medical follow-up by email, fax or telephone.

©https://ern-skin.eu/vaccination-advices/

20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared for the first time on TV screens.

On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.

One month later,  we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.

Annie Moissin, who was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happened next.

Thanks to you Annie,

Thanks to Solhand of which you are now the Chair.,

One can do nothing alone, Together we are stronger, we go further.

Marie-Claude Boiteux

Chair of Cutis Laxa Internationale,  Cécile’s mother

Living with …. Cutis Laxa

The French monthly magazine “La Revue du Praticien” (The Medical Practitioner’s Journal) published an article on Cutis Laxa in its November issue.

 

Read the article here (in French)

Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)

During the 5th annual meeting of the French Health Network FIMARAD (Network for Rare Cutaneous Disorders), Marie-Claude Boiteux presented the ePAGs’ work for Patients in ERN-Skin (in French at 9:57)

Here is how you can get subtittles in your own language :

e-Book edited by the French Federation for Skin (FFP)

FFP has just issues its first e-book on :

“Cutaneous disorders and psychology”

The French Federation for Skin helps you and shares a few pages on patients’ psychological situation as well as advice and analysis from our psychologists. It aims to give some points to help live a better daily life with the disorder.

Read (pdf in French)

Paris Dermatologic Days (JDP)

We were able to attend the JDP online, so as to be visible  despite everything.

We had a space in the virtual “Associations’ Village” and our Poster was accessible online by any and all visitors

 

Nevertheless we sorely missed the opportunity for face to face meetings with representatives of laboratories to talk about our activities.

Annual Meeting and 2nd Conference of the French Federation for Skin

On 1st December 2020 we attended online the Annual Meeting and 2nd Conference of the French Federation for Skin (FFP).

Following the 2020 annual report and the projects for 2021,

the FFP conference opened the floor to experts on the impact of Covid-19 for skin disorders,

paediatric dermatology, users’ participation on the evaluation of health products

and dermatology research.

Needless to say that it was an intense and riveting morning.