Rare Diseases South Africa NPO 120-991

22/05/2026

We love seeing the impact of the 💚

These handcrafted bears aren’t just toys, they represent hope, awareness, and support for the rare disease community.

For just 13 x R10s, you can own one and help make a difference.

Support the cause: www.rarebearproject.org

Loved by the Rare Bear Community

Meet Thingo, Zola, Khethelo & Croga, handmade with purpose and love.

For just 13 x R10s, you can take one home and help support the rare disease community.

Meaningful. Affordable. Impactful.

Get yours today: www.rarebearproject.org

21/05/2026

“Thank you for believing Elijah’s story matters. Thank you for speaking up when we needed voices beside ours. Thank you for reminding us that we are not alone.”

A message from Elijah’s family that reminds us why we do what we do. After a long battle for access to care, their words reflect the heart of what we’ve built over the past 13 years: support, advocacy, and standing with families when it matters most.

“We are endlessly grateful.”💙

Discover how we can support you: https://www.rarediseases.co.za/rareassistcasemanagement

21/05/2026

Behind every rare disease is a dream that deserves a future.

Your Slipper Day sticker is more than just a symbol, it’s a promise of awareness, support, and brighter days ahead.

Buy one. Wear it proudly. Be part of their journey.

20/05/2026

Each bear represents more than just a donation, it’s a symbol of hope, comfort, and support for those living with rare diseases. Together, small contributions are making a big difference in the lives of Rare Disease Warriors.

Join the movement and be part of the change!🥰

Buy a Rare Bear. Make a rare difference. ✨

Every bear supports the Rare Bear Project and helps bring comfort, awareness, and hope to the rare disease community. Just 13 contributions of R10 can change a life proving that small acts truly make a big impact.

Donate today: www.rarebearproject.org

20/05/2026

Today we recognise Behçet’s Disease Awareness Day 💙

A rare condition, but for those living with it, the impact is very real. By sharing knowledge, amplifying patient voices, and educating our communities, we continue to raise awareness and push for earlier diagnosis, better care, and stronger support systems.

Let’s keep the conversation going, today and every day.

19/05/2026

Today we raise our voices for those living with Crohn’s disease 💙

Awareness starts with understanding, breaking the stigma, and standing in support of every person navigating life with IBD.
Together, we can create a brighter, healthier future. Today we raise our voices for those living with Crohn’s disease 💙

Awareness starts with understanding, breaking the stigma, and standing in support of every person navigating life with IBD.

Together, we can create a brighter, healthier future.

19/05/2026

Don’t forget 💙

This is your reminder that your voice matters.

Rare Registry was built with you in mind, a safe, patient-first space to support your journey and make sure you are seen, heard, and counted.

Be part of something bigger.

Sign up today: https://lnkd.in/dYsNgY2G

18/05/2026

As we continue to celebrate 13 years, these moments tell a story words never fully can.

Thank you for being part of the journey. 💙

16/05/2026

Today, in honour of HAE Day, we are also attending a conference hosted by HAE South Africa in Cape Town.

As an organisation that advocates for patients impacted by rare diseases, it is always encouraging to see more patient advocacy groups thriving and raising awareness in support of a better quality of life for patients and their families.

15/05/2026

Today is also Huntington’s Disease Awareness Day 💙

We stand in support of individuals and families affected by Huntington’s, raising awareness and honouring their strength and resilience.

15/05/2026

Today is Global Prader-Willi Syndrome Awareness Day 🧡

We’re going orange to stand with families living behind the diagnosis and raise awareness across South Africa. Wear orange, share, learn, and support because awareness leads to better outcomes.

Real families. Real resilience.

Today, 15 May, is Global Prader-Willi Syndrome Awareness Day.

We Go Orange for families living Behind the Diagnosis.

In South Africa, awareness remains limited. Many people have never heard of PWS. Yet families across the country live with its realities every single day.

Today you can help by:
🧡 Wearing orange
🧡 Sharing this post
🧡 Learning one fact about PWS
🧡 Supporting a local family
🧡 Donating to research and support services

When awareness grows, diagnosis improves. When diagnosis improves, outcomes improve.

Let us stand with every parent who locks cupboards at night. Every child learning self-control in a body that works against them. Every sibling who quietly adapts.

Real lives. Real families. Real resilience.