Raising awareness for Rare Disease Day
JOBURG- Rare Disease Day in South Africa is 28 February and the Rare Disease Society of South Africa is calling on the general public to care for South Africans who have a rare disease.
It is estimated that 350 million people worldwide suffer from rare diseases and there are approximately 7000 different types of rare diseases and disorders with more being discovered each day. Eighty percent of rare diseases are genetic in origin. About 50 percent of people affected by rare diseases are children and 30 percent of them will not live to see their fifth birthday.
Kelly du Plessis, chairperson of the Rare Disease Society of South Africa said, “Individually rare but collectively common, rare disease patients form a minority of our society and receive minimal assistance and attention. Our acknowledgement and investment can contribute significantly to improving rare disease patients’ quality of life. With timely and accurate diagnosis and intervention, people with rare diseases can contribute significantly and positively towards our society.”
Oscar von Memerty (18) has been chosen as the face of this year’s campaign. The hip-hop dancer and motivational speaker has overcome the serious physical challenges he incurred as a result of his rare medical condition, Maroteaux Lamy Syndrome, which is characterised by dwarfism.
The theme for this year’s Rare Disease Day in South Africa is care. The aim of the theme is to encourage everyone to join together for better care by donating R10 to buy a ‘Jeans for Genes’ denim ribbon from selected stores countrywide. The public is encouraged to wear this ribbon and a favourite pair of jeans on 28 February or SMS ‘Rare’ to 38232 to help raise funds for better care.
Details: www.raredisease.co.za; info@rarediseases.co.za
