Rare ACTivists

18/10/2026

Rider Spotlight: Jaco Pretorius 🚴‍♂️💜

Jaco became a after recognizing that people living with rare diseases often have to fight for more than their health. They face a lack of awareness, understanding, and access to the support they deserve.

"No one should feel invisible simply because their condition is uncommon."

By riding for Rare Diseases South Africa, Jaco is helping to make the rare visible and giving a voice to those who are too often overlooked.

Join the movement. Share this post, spread awareness, and help us build a world where no one living with a rare disease feels unseen.

17/10/2026

Rider Spotlight: Margit Wambach 🚴‍♀️💜

This year, Margit takes on her very first Ride Joburg challenge, celebrating a milestone year after turning 60!

She's riding to raise awareness for the thousands of people living with rare diseases, many of whom still have no approved treatment options.

"This will be my first ever Ride Joburg. I turned 60 this year and would like to create awareness for the many rare diseases that exist. Only a fraction of rare diseases have approved treatments."

This is why she rides. This is why we ride.

16/10/2026

Rider Spotlight: Paul Schwendinger 🚴‍♂️💜

For Paul, Ride Joburg is about more than crossing a finish line. It's about family, resilience, and making a difference for those facing rare disease challenges every day.

"We love Rare and we love the cause. We pedal, run, and push through the pain because we are privileged with mobility. If we all do something small, together we can make a huge difference. And of course, we do this for our children, Luca, who lives with NDI, and Siena, who recently underwent thyroid cancer treatment."

Every contribution helps make a difference. 💜

14/10/2026

Some stories stay with us forever.

Today, we remember Sadie and celebrate the impact her life continues to have. As Rare ACTIVists, we're encouraging our community to support and turn remembrance into action.

Will you join the movement and swim in her honour?

Sadie Penn would have been 16 today.

She was feisty, fearless and dearly loved. In 2014, at three years and nine months old, Sadie lost her fight with two rare conditions, a combination so rare she was only the fourth reported case worldwide.

Today we want to honour every one of her 16 years with a swimmer. That’s 16 people signing up today to swim the aQuellé Midmar Mile in her name, one for each birthday she should have had.

Will you swim a year for Sadie? Join for Midmar, 11 to 14 February 2027, and help the 1 in 15 South Africans living with a rare disease.

Sign up today: https://www.rarediseases.co.za/swim4sadie

Happy 16th, Sadie. 💙

13/10/2026

Meet Gerda. She’s living with a rare disease, and she’s choosing to turn her journey into awareness, hope, and action.

This year, Gerda is riding at Ride Joburg 947 to help shine a light on the rare disease community. 💙

🚴 We’re riding. Are you?

Join us and make every kilometre count for awareness, support, and change.

Sign up today and ride for a purpose.

12/10/2026

Not riding with us this year? Why not make a splash for a cause instead!

Join Team Rare at the Midmar Mile 2027 and help raise awareness and support for the rare disease community. Every stroke helps us move closer to a better future for patients and families.

💜 Sign up today and Swim 4 Sadie. Together, we can turn every kilometer into hope.

09/10/2026

Join Team Rare for our annual Full Moon Night Ride and experience the magic of riding together under the evening sky.

💡 Lights on.
🚴 Wheels rolling.
💜 Community strong.

Meet us at Bidon Bistro on 29 October at 17:45 and be part of the ride.

07/10/2026

The bikes bring us together, but the cause keeps us riding. 💙

This community shows up year after year to raise awareness, create impact, and support those affected by rare diseases.

Ready to ride with purpose?

Join Team Rare for Ride Joburg 2026 and make every kilometer count.
https://www.rarediseases.co.za/ridejoburg

06/10/2026

Put your brand on the road for rare. 🚴

Sponsor a logo placement on our Ride4Rare team jerseys and help make every kilometre count.

📩 [email protected]

Your Logo. Your Impact. Your Ride. 🚴🏽‍♂️

The 2026 Ride4Rare Jersey is coming soon, and your brand could be part of the journey!

We've kept the design under wraps for now, but one thing is certain: this jersey will carry more than riders. It will carry awareness, advocacy, and hope for the rare disease community.

🌟 Limited sponsorship opportunities available
🌟 Side panel proudly sponsored by Hydromobile
🌟 Get your logo seen by cyclists and supporters across South Africa

Claim your spot before the big reveal and ride alongside a cause that changes lives.

Contact us today to secure your jersey sponsorship.
[email protected]

02/10/2026

Ride for a cause, not just the finish line.

Join and help raise awareness for the millions of South Africans living with rare diseases.

⏳ Seed entries close 4 October!

Sign up now and ride with purpose: https://www.rarediseases.co.za/ridejoburg