We are a registered Zimbabwean-based non-profit organization focused on improving the quality of life of families living with a rare disease.
We endeavor to raise awareness through education and advocate for the rights of people living with rare diseases and their families, conduct research by contact tracing, mapping, treatment, and care of Rare Diseases in Zimbabwe (RDZ). To make this change possible we mobilize resources to support service delivery for people living with rare diseases. Our organization works within the framework of global health coverage for all.
WHAT WE DO
Vision
All Zimbabweans living with rare diseases have access to early diagnosis, lifelong treatment, care and socio-economic support.
Mission
To ensure every rare disease patient has access to quality, affordable care and treatment services in order to reduce morbidity and mortality.
Goal
Improve the quality of life of people living with rare diseases through resource mobilisation, research, and advocacy
OUR WORK
The 300 million people living with rare diseases (PLWRD) around the world and their families face common challenges in all aspects of their daily lives. As a population with increasing vulnerabilities, they are disproportionally affected by stigma, discrimination, and social marginalization, within their social environment and in society at large. The paucity of knowledge and expertise on rare diseases and the lack of awareness of the challenges faced by PLWRD mean that they are psychologically, socially, culturally, and economically vulnerable.
It is important to define the extent of RDZ and thereafter offer the appropriate interventions at the family, community, and national levels. It is important to recognize this condition early and produce a holistic model of care for affected individuals and families.
Rare Disease Day
Every year on the 28th of February we celebrate everyone living with a rare disease on a global scale.
Rare Diseases In Zimbabwe
The number of people living with Rare Diseases in Zimbabwe is unknown and the majority of people who have a rare disease are scattered across the country unaware, lack information about rare diseases (rural communities), and do not have the facilities to get an appropriate diagnosis.
Projects
As an organization, we currently identify children living with rare diseases and their families and offer psychosocial support and counseling to them, economic support to their families, and involve the government in the implementation of rare diseases friendly policies.
You have not lived today until you have done something for someone who can never repay you
Recent Events
Rare Disease Day 2021- 2022 Heroes Campaign – Every year on the 28th of February we celebrate everyone living with a rare disease on a global scale.
The theme for Rare Disease Day 2022 was #ShareYourColours. Some of the activities that took place were our virtual webinar, virtual fun run/ walk, and a special illumination of an iconic building that was under the name “Light-Up Zimbabwe”, which took place on the 28th of February 2022
Meet Our Hero
Rare Disease Day shines a light on the global and diverse community of over 300 million people worldwide.
Joining the global campaign, and representing Zimbabwe were one of this year’s global heroes, our beneficiary Tshepiso Gloria Ndebele’s Story about living with Von Willebrand Disease.
