Across the globe, there are currently 300 million people living with a rare condition. Since 2008, Rare Disease Day has been celebrated internationally to raise awareness on equity in social opportunities, access to healthcare, diagnosis and therapies for people living with a rare condition. Coordinated by EURORDIS in partnership with over 70 national alliance patient organisations, this event has greatly contributed to the creation of an international community of voices for those living with rare conditions.

Occurring in 1 in 4000 males and 1 in 6000 females, Fragile X Syndrome is considered a rare condition. This Rare Disease Day, Fragile X International spread awareness on and celebrated its community both online and in person. 

Rare Disease Day: Social Media Campaign

FraXI’s social media team launched a series of information cards in collaboration with Rare Disease Day, containing key points on the demographics of those living with a rare condition, positivity and enhancing equitable access to healthcare and diagnosis. 

Rare Disease Day at the EU Parliament

Kirsten joined hands with a group of advocates for rare conditions from all over Europe to celebrate Rare Disease Day at the EU Parliament. The day was organised under the theme “The Impact of Rare Disease: More than you can imagine” and brought together policymakers, patient advocates and other stakeholders. The event also consisted of an expert panel discussing diagnosis, holistic care, psychological care, mental health, cross border care and the work of European Reference Networks (ERNs).