Alliance of Rare Diseases, Rare Diseases Info service, Orphanet

• Maladies Rares Info Service et le Forum des Maladies Rares : your resource site for information, guidance and support for patients, their families and professionals.

 NUMERO VERT : 0 800 40 40 43  

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• Alliance des Maladies Rares

"As the legitimate spokesperson for the 3 million French people affected by rare diseases, it sheds light on and challenges the public, health professional and institutional spheres. Its expertise as an association has a direct impact on public health policies and fosters progress in clinical and scientific research." excerpt from the website

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• Orphanet 

"Orphanet's aim is to provide high-quality information on rare diseases, and to ensure equal access to knowledge for all stakeholders...

Orphanet was created in France by INSERM (Institut national de la santé et de la recherche médicale) in 1997... Orphanet has gradually evolved into a Consortium of 40 countries, spread across Europe and the rest of the world." extract from the website

LES CAHIERS D'ORPHANET (2025)  

It's a complete guide to "Living with a Rare Disease in France", to help you understand the environments in which you live, to ensure your rights, and to guide you through the steps you need to take...​

OUR ORPHANET CODE: 647799 

• Orphanet code to be filled in or consulted if you are a doctor, health care or social care professional...

• Orphanet code to be indicated if you are a caregiver or patient

!! Please note: Integration into the BNDMR (BaMaRa tool) with update in autumn 2023.

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