Rare Disease Day falls on the last day of February and this year; they get to celebrate on the 29th day, a rare one in its own right; you can join them by taking part in the Denim Walk.
South Africa (28 February 2020) – Rare Disease Day usually falls on the 28th of February but thanks to the leap year, they get to celebrate on the 29th, a once-in-four-years bonus day.
Rare Disease South Africa launched its first official day in 2018. They marked the 28th of February, Rare Disease Day in South Africa. The organisation did this to show the challenges faced by people suffering from rare diseases and to educate the public about rare diseases.
The day was already globally celebrated but South Africa didn’t take part until 2018. The very first Rare Disease Day took place on the 29th of February 2008 in Europe, where they selected a rare day to honour the diseases people face.
In South Africa, where medical infrastructure, clinical research and patient support is often a challenge, Rare Disease Day aims to raise awareness and grow the support for people with rare diseases. Rare diseases are often of genetic origin, and usually life-threatening or chronically debilitating disorders.
Founded in 2013 by Kelly du Plessis, Rare Diseases South Africa is a non-profit organisation that has been successfully working to ensure that people living with a rare disease experience better recognition and support, improved health services, and a better life overall.
“Approximately 1 in 7 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many remain undiagnosed. Rare Disease Day is an opportunity to improve knowledge among the general public about rare diseases while encouraging researchers and decision-makers to prioritise the needs of patients living with these conditions.” – Kelly Du Plessis, Founder and CEO of RDSA
This year, the organisation hopes to reframe how rare diseases are seen. Rare Disease South Africa is hosting a walk this Saturday at the Walter Sisulu National Botanical Gardens. Aside from hosting the event on a rare day, they also have the rare opportunity to walk through the gardens in the evening.
“It’s a rare opportunity to experience the botanical gardens at night and we really hope you and your team can join us. Bring along headlamps, your brightest neon gear and your takkies and come join us as we journey through the dark to improve the lives of Rare Disease patients.”
The campaign targets the general public primarily and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Below is the information for the walk:
Date: 29 February 2020
Place: Walter Sisulu National Botanical Gardens
Time: Gates open at 4 pm, walk starts at 7 pm
“Tickets available at https://qkt.io/5Y1pwR and there will be a night market, as well as food vendors on site.
Tickets available on sale at the door but no cash will be accepted for security reasons. Hope to see you there”
You can find out more via their Facebook page here.
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