LeadPath for FOP

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. 💛