Did you know?
- It takes on average 10 years in Kenya for patients to get a diagnosis when facing rare disease.
- One quarter of children with rare disease die before their 10th Birthday, many do not have a
diagnosis in their lifetime due to the challenges it takes to get a diagnosis.
- The Kenya Government doesn’t recognize many Rare Diseases and no direct effort has been put to providing quality healthcare for diseases out of the “mainstream”
- There are over 350 million worldwide affected by Rare Diseases
- Only 6% of known rare diseases have a treatment and less than 1% are curative
So, we need every help we can get to provide hope
- We need more research to know how many Kenyans are affected by Rare Diseases, and create a database of Rare Diseases so that helping can be easy.
- Every year, we hold Rare Disease Day Kenya events to sensitize the country about Rare Diseases.
- We have developed a thriving online and in person peer to peer network of support
- We need to raise awareness and advocate for change in the society and the Government
We are mostly volunteer based, and your donation goes directly into the programs and research. You don’t have to donate money, you can donate other resources and expertise.
To donate, please email us on firstname.lastname@example.org