Tin Soldiers

23/04/2026

Today we mark Global FOP Awareness Day, a day dedicated to shining a light on Fibrodysplasia Ossificans Progressiva (FOP), one of the rarest and most disabling genetic conditions in the world.

A major breakthrough came with the discovery of the ACVR1 gene mutation, which is responsible for FOP. This discovery has been a turning point, opening doors to better understanding, improved diagnosis, and the development of targeted treatments that offer real hope for the future.

But awareness remains critical. Too many individuals are still misdiagnosed or diagnosed too late, sometimes leading to harmful interventions that worsen the condition. Early and accurate diagnosis can protect patients and change the course of their care. This is why the work that Tin Soldiers does educating clinicians and raising awareness remains so important.

Today, we renew our commitment: to raise awareness, to educate healthcare providers, and to ensure that those with FOP and other rare musculoskeletal conditions are recognized as early as possible.

28/02/2026

Rare Disease Day 2026 is a powerful reminder that rare is not invisible and that awareness must lead to action. 🩷💙💚

This year’s global theme calls on us to see more, think earlier, and act together. That message sits at the very heart of our work at Tin Soldiers.

Through initiatives like Army of Eyes, we equip frontline clinicians with the knowledge and tools to recognise the early signs of rare musculoskeletal conditions, before harm is done, before opportunities are missed, and before families spend years searching for answers.

For children living with rare diseases, early recognition can change everything. And for clinicians, a single moment of education can ripple into a life-changing diagnosis.

On Rare Disease Day 2026, we stand with the global rare community, advocating for visibility, timely diagnosis, and systems that are ready to respond, no matter how rare the condition.

If you would like to contribute to this life-changing work, please visit our website

Tin Soldiers is a patient FINDING organisation. We find people with FOP (Fibrodysplasia ossificans progressiva) who are living without a diagnosis, and connect them to care and support. We do this by creating far-reaching awareness, leveraging partner networks and educating healthcare professionals.

26/02/2026

🩵 A powerful reminder of why clinician education matters 🩵

Meet Scarlet 🥰

Following an Army of Eyes musculoskeletal (MSK) and FOP education session, a paediatric registrar was reminded of a young patient previously seen with unexplained “lumps on the back.”

That moment of reflection led to a re-evaluation of the case and as a result, Scarlet, a 5-year-old girl, was diagnosed with FOP.

We found one in a million. Identified from just the second provincial hospital where we delivered training.

This is the ripple effect of education. Equipping clinicians with the knowledge to recognise rare conditions earlier, avoid harmful interventions, and change the trajectory of a child’s life.

This is why we do what we do. 💛

24/02/2026

Army of Eyes is a flagship initiative of Tin Soldiers designed to change outcomes for children through earlier recognition and referral. 🤩😍

This paediatric musculoskeletal (MSK) screening and training programme equips frontline healthcare workers to spot early warning signs of MSK conditions in children, from ultra-rare diseases like Fibrodysplasia Ossificans Progressiva (FOP) to more common conditions such as Juvenile Idiopathic Arthritis (JIA).

By embedding validated screening tools - particularly the paediatric Gait, Arms, Legs and Spine (pGALS) examination - into routine primary care, Army of Eyes strengthens referral pathways and enables timely access to specialist care across diverse health systems.

The impact so far in South Africa:
• 112 children screened across clinics and schools
• 20% flagged for abnormalities
• 12% referred for specialist care
• 64% of referrals were for MSK conditions
• 1 case of FOP diagnosed

And in India, 87 medical officers, paediatricians and therapists trained, as part of this initiative.

And this is only the beginning. Conversations are now underway in the United States, Canada, and the United Kingdom to explore how Army of Eyes can be adapted and rolled out within their healthcare systems, bringing earlier recognition, safer care, and faster pathways to diagnosis to even more children.

This is what happens when education meets action. Earlier diagnosis, fewer missed cases, and better futures for children worldwide 🩵💙

20/02/2026

Behind every diagnosis is a team that makes it possible.
Here at Tin Soldiers, our work is strengthened by the insight and dedication of our Medical Director, Dr Chris Scott, and the many extraordinary clinicians who so generously give their time, expertise, and compassion to support our mission.

As Chris so powerfully reflects:
“One of the most profound realizations in my early career in paediatrics was the power of a diagnosis. It doesn’t just unlock management - it empowers carers and patients,
easing uncertainty and relieving the immense anxiety that comes with the unknown.”

This belief sits at the very heart of everything we do.

Thank you to the clinicians who stand with us, helping turn uncertainty into understanding, and fear into hope.

18/02/2026

As we head towards Rare Disease Day this month, we’re revisiting some of our success stories—stories that wouldn’t exist without the ongoing work to diagnose rare musculoskeletal conditions early, and the life-changing impact that diagnosis brings.

Nathan was one of our very first diagnoses. After hearing about his case, Tin Soldiers quickly reached out to his family and linked them with one of the many clinicians in our network. Nathan was diagnosed with Progressive Osseous Heteroplasia (POH). This is what his parents Desiree Bakkers-Nel and Leonard Bakkers-Nel had to say about their journey with us.

“From 4 years of not knowing to 4 days, it just happened. We had our diagnosis. To speak to the person who actually knows, that was absolutely amazing … I remember
standing in the kitchen and crying for a good 10 minutes.”

Stories like Nathan’s remind us why early diagnosis matters—and why continuing to educate and connect clinicians can change lives in just days, not years.

📸 Desiree, Leonard, Jayden and Nathan

10/01/2026

Many have asked why we’re launching this search initiative. My answer is simple: because it’s our moral duty.

FOP (fibrodysplasia ossificans progressiva) is ultra-rare — only ~900 patients have been identified worldwide, though over 8,000 are estimated to be living with it. Yet 90% are misdiagnosed.

The hallmark sign? In 98% of cases, the big toe is malformed and missing the middle joint — a clue visible at birth. But most healthcare professionals have never been trained to spot it.

Too often, FOP is mistaken for cancer. Biopsies are performed — and that trauma accelerates the disease. Bone begins to form in muscles, tendons, and ligaments, severely restricting movement. A skeleton, growing over a skeleton.

If we find these patients early, we can prevent harm, end unnecessary suffering, and change lives.

I’m proud that LeadPath is the first organization in the region to bring FOP forward.

We will continue navigating the path less taken — for every FOP patient and every family.

18/12/2025

02/12/2025

As we close out our challenge, we're delighted to shine a spotlight on a truly heartwarming act of kindness 💛💛

Phoebe Walters the brilliant mind behind this challenge, went the extra mile by purchasing colouring books and crayons, hand-crafting 21 beautiful cards and delivering them personally to the Red Cross Children's Hospital. The smiles she sparked were priceless. Way to go Phoebe! 🙌

A huge thank you to every single person who stepped up, showed up and made this challenge such a meaningful success.

And on this Giving Tuesday, if you'd still like to contribute, you can do so here www.tinsoldiers.org/paypal
Your gift will be matched by our generous sponsor, doubling your impact!

Let's keep spreading hope, joy and strength one step, one act of kindness, and one generous heart at a time 💛💛

27/11/2025

We are truly excited about this partnership to find and diagnose people living with FOP in the Middle East.

Initiative launched at a major Orthopaedic Meeting in Dubai aims to find undiagnosed FOP patients and connect them to a path of care.

25/11/2025

💛 Well done — and thank you 💛

Because of you, we’ve raised awareness for rare bone conditions and helped shine a light on children who are so often overlooked.

Your support means we can continue educating healthcare practitioners, improving early diagnosis, and ensuring more children get the care they need.

Together, we’re making a real difference. 💛

25/11/2025

We ended the Stepup4bones challenge with a private screening of The Whisper, a documentary that follows the lives of Lakshmi and Riya, two remarkable women living with Fibrodysplasia Ossificans Progressiva (FOP)—one of the world’s rarest and most disabling genetic conditions.

The screening was held at a small, intimate cinema in Johannesburg, South Africa to draw attention to FOP and other rare musculoskeletal conditions; it was also a critical fundraising event. Every rand raised will be matched by a generous sponsor, doubling the impact and helping to ensure that vital awareness, education, and diagnostic efforts continue to grow.

Photo credit: Daniella De Gouveia