Rare Disease Lesotho Association
Welcomes You!
Rea u amohela!
Rare Disease Lesotho
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 Our Founder
NTHABELENG RAMOELI
Nthabeleng 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.
She is a leader in the Rare Disease community in Africa. She has attended numerous regional and international conferences and authored papers and articles, including:
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Participated in High Level Conference for the Adoption of the UN Resolution on Rare Diseases
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Participated in High Level Conference for the Adoption of the UN Resolution on Rare Diseases
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Conference the Huddle South Africa 2017.
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Rare disease Conference in Johannesburg 2018
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Cancer conference for AfrIcan First Ladies 2018
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Rare Disease Day conference Namibia 2019
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Rare Disease Africa Conference Ghana 2021 Speaker and Moderator
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High level political Forum , sustainable development HLPF UN forum Speaker 2022
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Orphan Drug Congress Boston 2022 Speaker as part of the RDI team
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Honorary recognition for presentation titled “The Effects and Issues affecting Rare Patients in Africa due to inadequate access to drugs and medical trials” at the 6th Annual Summit on Rare Diseases and Orphan Drugs 2022
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Published Article :The Plight of Rare Diseases in Southern Africa: Health and Social Services Policy Recommendations 2023
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Nominated for the Rare Champion awards by The Global Genes 2023
The goal is through raising awareness, the lives of rare disease patients can improve.
Meet Our Board
What We Do
BUILDING COMMUNITY
IMPROVING HEALTH
RARE DISEASE AWARNESS & EDUCATION
EVENTS
GALA FOR RARE DISEASE DAY - 2018
YOUTH PICNIC
RDLA’S BIRTHDAY
World Suicide
Prevention
Day
CONTACT
RARE DISEASE LESOTHO ASSOCIATION
P.O BOX 9339, Maseru, Lesotho
+266.5388.5912