STXBP1 Foundation Participates in Rare Disease Awareness Month
STXBP1 disorders is a rare genetic disease. And, the STXBP1 Foundation is proud to work alongside other rare disease partners towards creating awareness of rare diseases and finding cures. Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008.
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity. 72% of rare diseases are genetic and 70% of those genetic rare diseases start in childhood.
The STXBP1 Foundation is featuring 2 of our patients during Rare Disease Awareness Month:
Beyond Rare Disease Awareness Month, we are active with the following rare disease organizations all year long:
NORD
EURORDIS
IndoUSRare
Rarebase
Rare Epilepsy Network
RARE-X
Learn more about Rare Disease Awareness Month here.
