We provide a United Voice for the Rare Disease Community in Kenya

ABOUT US

Rare Disease Kenya is a community of people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families and raising the profile of rare diseases across Kenya. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

WHAT WE DO

COMMUNITY ENGAGEMENT

Community engagement within the rare disease community is important to ensure patients are better supported. The feeling of being isolated and abandoned is synonymous with rare diseases, and we aim to overcome this by creating awareness and platforms in which our community can connect and support one another.

HEALTHCARE
NETWORK

We have an emerging network of doctors and health professionals to guide Rare Disease patients from presentation of symptoms to end of life care, through and around barriers, in the complex healthcare system to help ensure timely diagnosis and treatment. This is to ensure they have access to healthcare like the rest of the society

UNIFIED SOCIAL ADVOCACY

The Government doesn't concentrate on Rare Diseases, because, well, they are rare. Together as a community, we build active awareness to rare diseases to the government, hospitals and the society, to give them a voice and get the requisite attention... and ultimately find the necessary help to receive professional healthcare and access to amenities

SHOW YOUR RARE, SHOW YOUR CARE

CONTACT US

RARE DISEASE KENYA

Phone: +254 701 025753

Email: info@rarediseasekenya.org

Facebook: Rare Disease KE

Twitter: @RareDiseaseKE #RareDiseaseKE