Rare Disease Lesotho Association
Rea u amohela!
ABOUT RARE DISEASE LESOTHO ASSOCIATION
We Fight Helping Rare Disease Patients in Lesotho
Rare Disease Lesotho Association was founded in October 2017 by Nthabeleng Ramoeli , a young woman with Ehlers–Danlos Syndromes (EDS) and Seeng Nchai, a mother with child with a rare disease.
Our Purpose: The Organization assists all patients affected by rare diseases to access treatment and support care for improved health and quality of life.
Our Mission: To build a community of patients, caregivers, healthcare providers, and researchers to transform the lives of those living with rare diseases.
Our Vision: Revolutionizing rare disease care and raising awareness in Lesotho through collaboration with national and international stakeholders.
Meet the Founders
Madodo is a rare disease patient with a connective tissue disease, Ehlers–Danlos syndromes (EDS). EDS can effect a broad spectrum of the body's systems.
Her personal journey motivated her to become engaged and co-found Rare Disease Lesotho Association to better the lives of fellow patients.
The goal is through raising awareness the lives of rare disease patients can improve.
Seeng, is an activist and a mother of a child with a rare kidney condition.
Her daughter’s journey began with a diagnosis of Nephrotic Syndrome (Diffuse Mesangial Sclerosis). She has always been passionate about bringing change to the world. Patient advocacy, raising awareness, giving people better living conditions, establishing a rare community and education in Lesotho was needed to be created.
For this reason Madodo and I founded Rare Disease Association Lesotho (ADLA).