About Rare Disease Day 2014
Pledge your support for Rare Disease Day on 28 February 2014 by wearing a 'Jeans for Genes' ribbon.
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.
The Rare Disease Society of South Africa is calling on the general public to care for South Africans who have a rare disease.
Rare Disease Day was first launched in 2008, and is held on 28 February annually across the globe. The theme for this year's Rare Disease Day in South Africa is 'care' and encourages everyone in the rare disease community to 'Join Together for Better Care'.
You can support the Society's work by donating R10 to buy a 'Jeans for Genes' denim ribbon from selected stores countrywide (details listed on www.rarediseases.co.za), and wearing their ribbon and favourite pair of jeans on Friday, 28 February, or SMS 'Rare' to 38232 to help raise funds for better care.
Oscar von Memerty has been chosen as the 'face' of the 2014 campaign. The 18-year-old hip hop dancer and motivational speaker has overcome the serious physical challenges he incurred as a result of his rare medical condition, MPS 6 (Maroteaux Lamy Syndrome), which is characterised by dwarfism, among other symptoms. He shares his incredible story of courage and raises awareness about rare diseases and their impact on patients' lives as well as the necessity for timeous treatment.
Make your pledge now and make Friday, 28 February 2014, your 'Jeans for Genes' day.
For further information:
Email: az.oc.sesaesiderar@ofni
Web: www.rarediseases.co.za
Facebook: Rare Disease Day 2014 - South Africa
Twitter: @RarediseasesSA
SMS: 'Rare' to 38232