Rare Diseases South Africa NPO 120-991

25/10/2026

Patient groups do not wait for a seat at the table. They start with one family at a time.

This past week our Founder and CEO, Kelly du Plessis, joined patient advocacy leaders from across Africa at the Africa Rare Disease Summit in Egypt, and presented on how patient groups can act as catalysts for rare disease access, from a South African perspective.

Since 2013, RDSA has supported more than 6,500 patients and caregivers. What we shared is simple enough for any group to copy: navigate one family's case, engage the people who make decisions, and advocate with evidence and a solution. You do not need a mandate to start.

Thank you to everyone who took part in the Patient Advocacy Workshop, "Africa for One Rare". Rare is hard. Rare and alone is harder. We left with a clearer picture of how much more we can do together.

24/10/2026

💙 Last chance to have your say! 💙

This Monday, South Africa starts building its first-ever Rare Disease Action Plan, and the voices of patients and families need to be part of it.

You don’t need to travel, and you don’t need any medical or policy knowledge. Your lived experience is what counts.

💻 Join online from home
📅 Monday 26 October, 09h00 to 17h00
💳 R199
💙 Free for registered RDSA members (message us for your code)
⏰ Registration closes Sunday

Online delegates will have their own discussion group, led by Hlumela and Jordan. It’s a space to talk about what really matters: getting a diagnosis, the costs families carry, and being heard.

👉 https://www.rarediseases.co.za/event-details/moving-towards-a-south-african-rare-disease-action-plan

Please share with anyone in our community who should be in this conversation. 🦓

22/10/2026

Help shape South Africa's first Rare Disease Action Plan.

Join us online on 26 October for just R199 and be part of the conversation with the National Department of Health, WHO, rare disease experts, patients, and caregivers.

Hear the latest updates, share your lived experience, and help identify the priorities that matter most to the rare disease community.

Online registration closes 23 October

🔗 Register here: https://www.rarediseases.co.za/event-details/moving-towards-a-south-african-rare-disease-action-plan

RDSA members attend online free with a registration code.

22/10/2026

Choosing an option? Check how the scheme pays, not just what it covers.

Formulary: the list of medicines the scheme pays for in full. A non-formulary drug can mean a co-payment where a clinically appropriate alternative exists.

Designated service providers (DSPs): for PMBs, the scheme must pay in full if you use its DSP and follow its protocols. Go elsewhere by choice and you may pay the difference.

Protocols: schemes set treatment and funding rules based on clinical evidence, cost-effectiveness and affordability.

In an emergency, or if no DSP is available, you must still be covered in full.

If your treatment falls outside the formulary, ask your doctor to motivate for it. Ask the scheme how its motivation process works before you switch, not after.

Has a scheme ever declined your medicine? Share your experience in the comments. We read every one.

RDSA's views for member education. Not financial or legal advice.

21/10/2026

📚Magic in My Marks

Written by Jacqueline Dean and inspired by her daughter Emily's journey with Congenital Melanocytic Nevus (CMN), Magic in My Marks is a heartfelt children's book that celebrates courage, confidence, and the beauty of being different.

Through Emily's story, young readers learn that our differences are not something to hide, but something to embrace. The book encourages kindness, understanding, and inclusion, helping children build empathy for those living with visible differences and rare conditions.

A portion of the proceeds is donated to Rare Diseases South Africa (RDSA), helping us continue to advocate for, support, and empower individuals and families affected by rare diseases across South Africa.

By purchasing Magic in My Marks, you're not only sharing an important message with a child, you're helping ensure that no rare disease patient or family has to navigate their journey alone.

Order your copy today and be part of creating a more inclusive and compassionate world https://www.rarediseases.co.za/product-page/magic-in-my-marks-by-jacqueline-dean

20/10/2026

Join our Wear Jeans for Beauty in the Genes campaign this Down Syndrome Awareness Month!🩵

Wear your jeans and help raise awareness and support inclusion for people with Down syndrome. Encourage your colleagues, friends and family to get involved and share the message that every person deserves dignity, equality and opportunity.

19/10/2026

Today, we honor Rim Bendjaada from Algeria, a passionate advocate living with Pulmonary Veno-Occlusive Disease (PVOD), a rare form of pulmonary hypertension.

Diagnosed at just 12 years old, Rim has transformed her personal journey into a powerful mission of advocacy, awareness, and hope. As a patient advocate, writer, ambassador, and representative of the patient voice, she works tirelessly to ensure that people living with rare diseases and pulmonary hypertension are seen, heard, and supported.

Through sharing her story, connecting with patient communities across borders, and championing the needs of those affected by rare diseases, Rim reminds us that every voice has the power to create change.

Thank you, Rim, for sharing your journey with the RDSA community and for helping to build a future where rare disease patients across Africa and beyond are no longer invisible. 💙

"We may be rare, but we are not invisible."

19/10/2026

Word of the Week from Nomsa

"A boat doesn't go forward if each one is rowing their own way."
– Swahili Proverb

Unity is what moves us forward. When we work together towards a shared purpose, progress becomes possible.

Let's row in the same direction and achieve more together. 🚣‍♀️✨

18/10/2026

Every ride is about more than the kilometres. It's about community, connection, and creating awareness for those living with rare diseases. 💙

Join us for the Full Moon Night Ride on 29 October at 17:45 from Bidon Bistro.

See you on the road! 🚴

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.

16/10/2026

Today, we celebrate the incredible leaders who guide, inspire, and champion our mission every day. 💙

A special thank you to Nomsa and Kelly for your dedication, vision, and unwavering commitment to the rare disease community. Your leadership helps turn challenges into opportunities and makes a meaningful difference in the lives of so many.

Happy Boss’s Day! 🌟