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Our RARE ACTIVist programme needs YOU to help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community.

Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.

Plus when you participate in one of Rare ACTIVists featured events, should you surpass your fundraising goal, you’ll receive:

  • complimentary race registration

  • Rare ACTIVists race gear and

  • team support

Sign up below to become a #RareACTIVist and use your mobility to the benefit of those without it. #Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team!

BE A HERO FOR RARE DISEASES.

BECOME A RARE ACTIVIST TODAY!
rare activist sign up form
Gender
How did you hear about Rare Diseases South Africa?
What disciplines would you like to partake in?
Cycle Jersey / Running Shirt
Upload File
Do you provide us with consent to share your picture and reason for becoming a #RareACTIVist on social media as part of our marketing efforts?
Rare ACTIVists Team Entry

STAY IN THE KNOW ON ALL OUR ACTIV ITIES BY FOLLOWING US ON THE SOCIALS 

  • Instagram
  • Facebook
  • Twitter

UPCOMING EVENTS

  • Understanding Pulmonary Fibrosis
    Understanding Pulmonary Fibrosis
    Tue, 28 May
    Zoom
    28 May 2024, 19:00 – 20:00
    Zoom
    28 May 2024, 19:00 – 20:00
    Zoom
    Interstitial lung disease (ILD) serves as an overarching term encompassing a diverse array of conditions characterized by the scarring, or fibrosis, of lung tissue. Among these conditions lies pulmonary fibrosis, a specific affliction where the lungs progressively develop scar tissue over time.
  •  Primary Mitochondrial Disease – A Global Energy Crisis
     Primary Mitochondrial Disease – A Global Energy Crisis
    Tue, 04 Jun
    Zoom Webinar
    04 Jun 2024, 11:00 – 12:00
    Zoom Webinar
    04 Jun 2024, 11:00 – 12:00
    Zoom Webinar
    Join us this June for an intriguing webinar featuring Professor Rahman and Mrs Meldau as they delve into the depths of primary mitochondrial disease. Gain unique insights from their expertise as they unravel the complexities of this condition.
  •  Medical Aid Madness: Are Your Benefits Burning You Out?
     Medical Aid Madness: Are Your Benefits Burning You Out?
    Wed, 21 Aug
    Zoom
    21 Aug 2024, 19:00 – 20:00
    Zoom
    21 Aug 2024, 19:00 – 20:00
    Zoom
    Join our webinar to unravel the complexities of your medical aid! Learn strategies to prevent flare-ups and maximize your benefits with expert guidance. Don’t let confusion compromise your care—master your medical aid and stay healthy! Secure Your Spot Now! Transform how you handle your health cove
  • Denim Walk 2024
    Denim Walk 2024
    Tue, 24 Sept
    Walter Sisulu National Botanical Garden
    24 Sept 2024, 18:00 – 20:00
    Walter Sisulu National Botanical Garden, Malcolm Rd, Poortview, Roodepoort, 1724, South Africa
    24 Sept 2024, 18:00 – 20:00
    Walter Sisulu National Botanical Garden, Malcolm Rd, Poortview, Roodepoort, 1724, South Africa
    Denim Walk – a fun-for-all, evening walk through the beautiful Walter Sisulu National Botanical Gardens. Come and #ShareYourColour with our RARE community, your friends and your family. And please, be sure to wear jeans and an old white shirt as we have some colourful play planned.
  • Williams Syndrome Awareness Month
    Williams Syndrome Awareness Month
    Date and time is TBD
    Awareness Days
    Date and time is TBD
    Awareness Days
    Date and time is TBD
    Awareness Days
    Williams Syndrome Awareness Month is observed annually in May to raise awareness about Williams syndrome, a rare genetic condition characterised by developmental delays, unique facial features, and cardiovascular issues.
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