Our Vision
Our vision is to be a catalyst for change that will help create a future in Tanzania where individuals
with rare diseases receive timely diagnosis and comprehensive care through well-established
networks of support, advocacy, and resources that empower individuals with rare diseases to lead
fulfilling lives and no one faces the challenges of rare diseases alone. Ultimately, we envision a
society that is inclusive, compassionate, and supportive of patients living with rare diseases and
where the unique needs of all rare disease patients are recognized and addressed.
About Us
We are a non-governmental organisation focused on creating impact and making a difference in the lives of those living with rare diseases. Our work is primarily focused in Tanzania but simultaneously hope our efforts can also help in adding impact towards alleviating the global rare disease burden.
Meet Benedicto Charles
On the 28th of August 2008, a healthy boy full of life called Benedicto Charles was born in a rural village called Nyashimbi in Shinyanga, Tanzania.
However, at the tender age of one and a half, this boy full of life began displaying signs of an unknown illness. By the time he turned two, his entire body was covered with this mysterious ailment, leaving everyone baffled. As he grew older, the illness grew worse as well; affecting different organ systems in his body…
"A disease may be rare, but hope should not be."
Facts About Rare Diseases
From the unique experiences of affected children to the ongoing efforts in research and collaboration, this section provides concise and enlightening insights into the world of rare diseases.
Global Impact
Rare diseases collectively affect an estimated 300 million people worldwide.
Diagnostic Challenges
Due to limited awareness, rare diseases often face delays in diagnosis and misdiagnosis.
Genetic Basis
About 80% of rare diseases have a genetic component, often caused by mutations in a single gene.
News & Articles
Explore the latest updates, insights, and in-depth information on rare diseases and about our foundation.
What are the narratives of rare diseases that need to be changed?
What are the narratives of rare diseases that need to be changed? Narrative 1: Rare diseases only affect a small number of people. Reality: Rare diseases are indeed individually rare…