Get behind rare disease Jean for Genes campaign

ROODEPOORT – A massive crowd is expected to rally behind the international Denim Walk, in support of the rare disease awareness campaign to be held at the Walter Sisulu National Botanical Gardens on 26 February.

The event, coordinated by the Rare Disease Society of South Africa, is aimed at creating awareness of over 6 500 rare diseases in the country and across the world.

The organisation’s spokesperson, Megan Hunter said, “This is our first-ever event and we hope for over 500 people.”

Hunter, who also suffers from a rare disease called myasthenia gravis, a rare chronic autoimmune disease marked by muscular weakness, said the organisation was founded by Kelly du Plessis, the chairperson, after her son Juan suffered from Pompe, which is a rare disorder caused by the buildup of a complex sugar called glycogen in the body’s cells.

Hunter added, “This month we are trying to focus on Prader-Willi syndrome, but there are many other diseases. If [we] combined all the patients with a rare disease, there would be more of them than all the patients with Aids and cancer combined, which is quite scary.”

To support the cause, the organisation has encouraged many companies to participate in the Jean for Genes project, which will allow employees to wear their favourite jeans on 28 February at a cost of R10.

The Rare Disease Society of South Africa has a number of items like ribbons and stickers, which they sell online.

Visit Rare Diseases South Africa on Facebook for the stock and list of common of rare diseases in the world.

Details: Rare Disease Society of South Africa 010 594 3844; 072 476 7552.

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