Rare Disease Day 2024
A disease is rare when it affects fexer than 1 in 2,000 people.
Rare Disease Day
La Journée des maladies rares est le mouvement mondial coordonné sur les maladies rares, qui œuvre pour l'équité en matière d'opportunités sociales, de soins de santé et d'accès au diagnostic et aux thérapies pour les personnes atteintes d'une maladie rare.
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Research conducted on rare diseases at the CIRI
At the CIRI, 2 teams conduct research on auto-immune and auto-inflammatory rare diseases :
- LYACTS team (T. Walzer), linked to the reference center RAISE via Alexandre Belot.
- IB2A team (T. Henry), linked to the reference center CéRéMAIA via Yvan Jamilloux.
Those teams are a part of the FAI²R network, a health network about rare auto-immune and auto-inflammatory diseases. The network is funded and led by the Health Minister. FAI²R federates resources and expertise to facilitate the care, diagnosis and management of adult and pediatric patients.
Those teams study especially pediatric onset lupus, familial Mediterranean fever and ROSAH syndrome.
A huge thank you to the clinicians working on rare diseases, and to the patients !