LeadPath for FOP

09/03/2026

To every remarkable woman — thank you for your strength, compassion, and the difference you make in the lives of others every day.

27/02/2026

Some legacies are built not in words, but in courage.

Harry Eastlack (1933–1973), living with Fibrodysplasia Ossificans Progressiva (FOP) — one of the most devastating ultra-rare genetic conditions, where bone forms in places it should not, gradually restricting movement and independence — made a profound decision before his passing: to donate his body to science so others might better understand this condition.

Years later, Carol Orzel (1959–2018), who also lived with FOP, made the same decision. She once said she hoped her donation would help doctors learn — and help patients feel less alone.

Through their extraordinary generosity, generations of physicians and researchers have come to better understand what FOP truly does to the human body.

Their donated skeletons have helped make the invisible visible.

Today, their skeletons are preserved side by side at the Mütter Museum, at The College of Physicians of Philadelphia, where they continue to educate medical students, clinicians, and researchers from around the world.

As we approach Rare Disease Day, if you can, please learn, share, and support the families living with rare diseases — including FOP.

24/02/2026

Visit to Dubai Medical University

What if recognizing one small clinical sign could prevent a lifetime of harm?

Last week, we had the privilege of visiting Dubai Medical University to advance an important conversation: how do we equip future physicians to recognize what is rare—before it is misdiagnosed?

Our discussion focused on integrating awareness of Fibrodysplasia Ossificans Progressiva (FOP) into student education.

FOP is ultra-rare, yet its early clinical sign is strikingly recognizable: malformed great toes present at birth. Despite this, up to 80% of patients are misdiagnosed—and procedures such as biopsies can accelerate irreversible heterotopic ossification.

When medical students learn to identify hallmark signs early, they do more than diagnose correctly. They prevent harm.

We are deeply grateful to the leadership and faculty at DMU, represented by Prof. Yousif El-Tayeb, Dean of the College of Medicine, and his team for their openness to embedding FOP within lectures and academic discussions.

This is how systemic change begins—not only in clinics, but also in classrooms.

No patient should remain hidden.
And no preventable harm should occur because awareness was missing.


Tin Soldiers

09/01/2026

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.

30/11/2025

Thank you MedEdge MEA for covering our initiative to find the missing FOP patients across the region.

Fibrodysplasia Ossificans Progressiva (FOP) is an ultra-rare disease. Globally, only around 900 cases have been officially identified — but it’s estimated that over 8,000 people may be living with this condition.

FOP is caused by a single gene mutation that triggers abnormal bone formation in muscles, tendons, and connective tissue — progressively restricting movement and function.

Despite its severity, 90% of FOP cases are misdiagnosed. And yet, it’s often easy to recognize: in 98% of cases, the big toe is visibly malformed and missing the middle joint — a sign present at birth. But most healthcare professionals have never been trained to spot it.

We are launching this mission to change that — and more importantly, to find everyone with FOP, wherever they are.

I am so proud of the LeadPath team and our volunteers who are leading this effort and raising visibility for FOP across the region. And deeply grateful to the many healthcare professionals in clinics, hospitals, academia, and both public and private healthcare sectors who have already stepped up to support this mission.

More to come.

Initiative launched at a major Orthopaedic Meeting in Dubai aims to find undiagnosed FOP patients and connect them to a path of care. At the 13th Emirates Orthopaedic Society Meeting in Dubai, LeadPath Healthcare Innovations and Tin Soldiers Global announced the launch of the LeadPath–Tin Soldiers...

27/11/2025

We’re proud to launch the LeadPath–Tin Soldiers Global Search Initiative — a mission to find people living with FOP (fibrodysplasia ossificans progressiva) across the Middle East who have gone undiagnosed or misdiagnosed for far too long.

This isn’t just about medicine — it’s about humanity. Each undiagnosed FOP patient is someone suffering in isolation or receiving the improper care.

Every step we take could change a life.
Let’s find everyone with FOP — wherever they are.

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

05/11/2025

I’m stepping up with 21 push-ups for the challenge to support the amazing heroes in the FOP community and Tin Soldiers Global. FOP is an incredibly rare disease that turns muscle and tissue into bone, making movement more and more difficult.

LeadPath for FOP will be donating on behalf of each of our members who joins this challenge. I invite the LeadPath colleagues and our advocates to do 21 of anything – 21 steps, dances, you name it – to raise awareness and funds.

A huge thank you to the entire Tin Soldiers Global team for spearheading this movement.

04/11/2025

I’m stepping up with 21 push-ups for the challenge to support the amazing heroes in the FOP community and Tin Soldiers Global. FOP is an incredibly rare disease that turns muscle and tissue into bone, making movement more and more difficult.

LeadPath for FOP will be donating on behalf of each of our members who joins this challenge. I invite the LeadPath colleagues and our advocates to do 21 of anything – 21 steps, dances, you name it – to raise awareness and funds.

A huge thank you to the entire Tin Soldiers Global team for spearheading this movement.

Odette Schwegler Bhadrish Vallabh Vanda Harries

27/10/2025

Three days to go until something special begins, a movement that’s about more than just awareness. It’s about standing with children who face their own uphill climbs every day.

At Tin Soldiers, we believe that when people understand what these children face, they’re inspired to help. And when that help turns into action, the impact is incredible! It turns into better educated communities, better care and more children getting the treatment they deserve.

In three days, we’ll share a way for you to be part of that impact. It’s small, it’s meaningful, and it’s coming soon. 💛