Rare diseases South Africa

What began as a simple challenge amongst friends and family to raise awareness of Pompe Disease using the Momentum 94.7 Cycle Challenge as a platform, has evolved into charity initiative which seeks to help as many children and adults with rare conditions. Pedalling 4 Pompe is the main fundraising event for the Rare Disease Society of South Africa.

Pedalling-for-Pompe-&-SuperGene-Flyer-A5_lr-12012 was the first year we entered as a charity bond and despite being both amateurs at cycling and at the fundraising process – we managed to end up 5th out of the 93 charities in terms of funds raised for the cause. What most people don’t realize is that most of the 122 riders who joined our cause were friends and family, who joined not because they love cycling or were super fit and looking for a challenge – but because it is a cause so close to all our hearts and it is something that could affect and every one of us and the more awareness we can create, the more change of sufferers of rare diseases finding answers and hopefully cures. Cycling 95kms is a challenge – particularly for individuals who don’t train consistently – but our motivation was that we had our health and this was the least we could do to create awareness for sufferers of rare illnesses who didn’t have the option to “give up” when the disease got too tough!

This year, we have introduced our new mascot, SuperGene. In honour of all our superhero patients, who continuously fight battles with their bodies. We know that Superheros possess super qualities, such as bravery, resilience, perseverance, courage and determination, hence, these characteristics will make up the basis of our 2014 team.

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South Africa

Provinces and territories talk health care  — Canada NewsWire
Participating provincial and territorial health ministers discussed the significant challenges they face in providing new drug therapies to treat rare diseases.

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