Fibrous Dysplasia Warriors Africa Pty Ltd

05/02/2026

Our RARE Merch Presale is STILL ON!
Did you miss out? Don’t worry, you’ve still got time to secure your favourite RARE hoodies, tees, bucket hats, stickers, mouse pads, and starter packs!💙
Stock is limited, so grab yours while the presale lasts!
https://www.rarediseases.co.za/shop

05/02/2026

🧬 People living with a rare disease often wait years for answers, facing limited research, slow progress, and therapies that remain out of reach.

Breakthroughs in genetics hold enormous promise, but we must ensure that innovation translates into equitable access, so progress benefits everyone, not just those in certain countries or health systems.

⚖️ Equality means giving everyone the same.
💜 Equity in rare diseases means every person, no matter their condition or country, deserves the same chance to benefit from a treatment for their condition.

👉 Learn more about equity: https://go.rarediseaseday.org/equity

05/02/2026

Rare Disease Month is here. 💜

Every movement, every story, every effort matters.

Read more on our website and join us as we raise awareness, spark conversations, and celebrate every step taken.

https://www.rarediseases.co.za/post/seven-years-to-a-diagnosis-a-lifetime-of-advocacy

05/02/2026

When a family first receives a diagnosis of one of the first things they ask themselves: what will life be like with this diagnosis?

One way to we answer that question is through our photo sharing intiative during . Life can be so many wonderful, wild, inventive, challenging, and awesome ways! Submit your photo to our for the 2026 push!

https://fdmasalliance.org/gawphotoform/

05/02/2026

THIS story doesn't embody "FD/MAS Found Family" then WE DON'T KNOW WHAT!

We LOVE the unshakeable spirit we find in every corner of this community, and we LOVE the story of this South Georgia community coming together to rally around one rare but mighty 6-year-old!

Join us to celebrate more of our during FD/MAS Global Awareness Week (Feb 20-27th)

https://www.walb.com/2026/01/29/six-year-old-south-georgia-girl-faces-rare-bone-disorder-with-unshakable-strength/?fbclid=IwdGRzaAPo0t1jbGNrA-jSwGV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHgEzSbKJggAT0JOF9z5ZlM-OhaGDip4cXkaobd5W2lBwOP49pXjVtZTSfLUo_aem_JaTI8MsE5yl4K4Wgl9vY6A

28/10/2024

Did you see these?
The holidays are approaching, decorate your tree, or your home by showing some with these limited edition decor! Make the holidays a little bit brighter this year, support them, and support us! 😇💫🎄

🎄Introducing Our Limited Christmas Edition Trio!

'Tis the season to treat yourself and your loved ones to something truly special! We’re excited to share our exclusive Christmas Edition Trio this holiday season, designed to add a little extra magic to your festive celebrations.

Why You’ll Love It:
🎅 Festive packaging, perfect for gifting
🌟 Limited-edition design that captures the spirit of the season

Make this holiday season unforgettable with a touch of our Christmas Edition Trio. Get yours before they’re gone!

Shop Now: https://www.rarebearproject.org/product-page/ho-ho-ho-christmas-edition

Available only while stocks last—don’t miss out!

Image credit: CrochetHighway Design

24/09/2024

Happy Heritage Day 2024 from Fibrous Dysplasia Warriors Africa! As we celebrate our diverse cultures and traditions, let’s come together around the braai, sharing stories, good food, and the strength that unites us. Together, we rise!

24/09/2024

If you have not yet, please make sure to update, or do take the survey!
Hope you are all doing well!

This month’s featured FD/MAS Registry survey is all about Pain treatment and other medications. We know your treatment may change over time, which is why we encourage you to come back and update your surveys from time to time! The more we share, the more powerful our data will be for research! www.fdmasregistry.org

24/09/2024

Remember to shop your bear! Show your stripes and support the Rare Bear Project The Rare Bear Project 🐻

24/09/2024

FD/MAS Alliance Group:
https://www.facebook.com/fibrousdysplasia

The FD/MAS Alliance, incorporated as the Fibrous Dysplasia Foundation, is the leading patient advocacy organization supporting individuals affected by fibrous dysplasia and McCune-Albright syndrome.

24/09/2024

Reminder to join the FD/MAS Alliance group community:

https://www.facebook.com/share/q5UHnxhCZV49S6Ya/?mibextid=xfxF2i