The occurrence of rare diseases in the country is a case of massive importance, not only because of our general ignorance towards them, but also because of their lack of effective treatment due to the above stated ignorance. In most cases, in Lesotho, rare diseases are put at the back burner, mainly because of their rarity for one, and secondly because most Basotho do not know what to make of them.
Our highly rigid societal ways refuse to allow the occurrence of diseases such as Schizophrenia and Bipolar disorder, merely reducing them to witchcraft. There is an organization that is however willing to unmask this fiend of rare diseases within our beautiful country, and here is something on them.
Rare Diseases Lesotho Association is a Non-profit Organization registered in October 2017 in accordance with the Societies Act of 1966 of Lesotho. The Organization assists all patients affected by rare diseases to access treatment and support care for improved health and quality of life.
The intention is to facilitate and support advocacy and engagement between those with the ability to prevent, inter, treat and provide support care for patients and families affected by chronic and rare diseases in Lesotho.
A rare disease is considered rare when it affects 1 person in a population group of 2000 people. Although rare and genetic diseases have many symptoms and are uncommon to most doctors, rare diseases as a whole represent a large medical challenge.
Individually rare but collectively common, rare diseases are life threatening and chronically debilitating conditions which are uncommon and require special combined efforts to address.
Rare Diseases Lesotho Association’s Mission
To build a community of patients, caregivers, healthcare providers, researchers and supporters to impose joint effort and transform the life of those living with Rare diseases.
Vision:
Revolutionizing rare disease care and raising awareness about them in Lesotho through collaboration with different entities.
CONTACTS:
Postal Address:
P.O. Box 9339
Maseru 100
Lesotho
Physical Address
Qhoalinyana Street, Ha thetsane
Maseru 100, Lesotho
Facebook: Rare Diseases Lesotho Association
Instagram:@rare_diseases_lesotho
Tel : +266 57796134