Yann Le Cam
Chief Executive Officer, EURORDIS – Rare Diseases Europe
On 28 February, over 100 countries and regions around the world join their voices to raise awareness and generate change for the 300 million people with rare diseases, their families and carers.
The rare disease patient community remains a marginalised and largely invisible population, with little information about their diseases and rights, few treatments available and a high level of psychological, social and economic vulnerability.
Rare Disease Day helps individuals and families affected by a rare condition to find a community. It also improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Raising awareness and taking action
Though the campaign is community-led, everyone can get involved, including families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public in raising awareness and taking action for this vulnerable population who require immediate and urgent attention.
As the global pandemic continues to challenge the world, this year’s Rare Disease Day continues to be a bit different. However, just because we can’t come together physically, doesn’t mean we can’t stay connected.
Participating in the Global Chain of Lights #LightUpForRare and the Share Your Colours storytelling initiative is one example. By sharing your colours and shining a beacon from your home, office or town, you are showing your solidarity with the 300 million people with rare diseases worldwide and the 30 million living in Europe.
Over the last 13 years, Rare Disease Day has played a critical part in building an international rare disease community.
A global collaboration
Rare Disease Day is the globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and 67 national alliance patient organisation partners working towards equity in social opportunity, healthcare and access to therapies for people living with a rare disease.
Over the last 13 years, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, multicultural and multi-lingual, but united in purpose.
Every year the campaign has grown in momentum with new countries getting involved. New financial support from the Chan Zuckerberg Initiative and Fondation Ipsen under the aegis of Fondation de France, on top of contributions from the European Commission as well as corporate and individual donors, has enabled us to expand the campaign reach worldwide.