LeadPath for FOP

Behind every rare disease is a story that deserves to be told.

FOP affects approximately 1 in 1 million people worldwide, and for many families, obtaining a diagnosis can take years.

By sharing awareness, we can help improve understanding of this ultra-rare condition and support those living with it.

💜 Share this post to help spread awareness.

Did you know that nearly 80% of people with FOP are initially misdiagnosed?

Because FOP is so rare, many healthcare professionals may never encounter it during their training. Recognizing the early signs can help prevent unnecessary procedures and lead to earlier, more accurate diagnoses.

Help spread awareness of FOP and the importance of recognizing rare diseases. 💜

Fibrodysplasia Ossificans Progressiva (FOP) is an ultra-rare condition where bone forms in places it shouldn’t, progressively restricting movement and impacting lives.

On FOP Awareness Day, we stand with the FOP community—raising awareness, sharing hope, and supporting every individual and family affected.

We remain committed to earlier diagnosis, better care, and ensuring no patient is left unseen.

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

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.

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

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.

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.

LeadPath and Tin Soldiers Launch Mission to Find “Missing” FOP Patients at the 13th Emirates Orthopaedic Society Meeting 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...

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.

LeadPath and Tin Soldiers Launch Mission to Find “Missing” FOP Patients at the 13th Emirates Orthopaedic Society Meeting Initiative launched at a major Orthopaedic Meeting in Dubai aims to find undiagnosed FOP patients and connect them to a path of care.