February 28, 2023 is the designated “Rare Disease Awareness Day” across the world.
1 in 20 people will be diagnosed with a rare disease at some point in their life. Despite this, there is no cure for the majority, and many go undiagnosed. Rare Disease Day 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.
- 300 million people living with a rare disease worldwide
-72% of rare diseases are genetic
-70% of those genetic rare diseases start in childhood
Together, we aim to raise awareness through education for our community, researchers, clinicians, and policymakers to bring equitable access to diagnosis, healthcare and treatments,
We may be Rare, but together, our voice is LOUD!
#Rarenotquiet