Association marks Rare Disease Day

0
221
ADVERTISEMENT

By Neo Kolane

The Rare Disease Lesotho Association (RDLA) celebrated World Rare Diseases Day 2021 yesterday under the theme ‘Telehealth in Rare Disease Clinical Practice and Research: The Silver Lining Now and Beyond COVID-19’.

The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients.

RDLA is a non-profit organisation registered in October 2020, which assists patients affected by rare diseases access treatment and support care for improved health and quality of life.

ADVERTISEMENT

A rare disease is considered rare if it affects one person in a population group of 2000 people.

In an interview with theReporter, the founder of RDLA, Nthabeleng Ramoeli stated that the intention of the association is to facilitate and support advocacy and engagement between those with the ability to prevent, treat and provide support care for patients and families affected by chronic and rare diseases in Lesotho.

Some of the rare diseases found in Lesotho are Elhers Danlos syndrome, lupus, haemophilia, cerebral  palsy, neurofibromatosis, rheumatoid arthritis, Myasthenia gravis and nephrotic syndrome