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

At the 13th Emirates Orthopaedic Society Meeting in Dubai, LeadPath Healthcare Innovations and Tin Soldiers Global announced the launch of the LeadPath–Tin Soldiers Search Initiative — an initiative to find undiagnosed patients living with Fibrodysplasia Ossificans Progressiva (FOP) in the Middle East and connect them to a path of care.

This initiative seeks to build a network that transcends borders, enabling a doctor in the UAE, Saudi Arabia, Egypt, or anywhere in the region to tap into global expertise — and ensuring that an FOP patient in an outlying town can be connected to the world’s FOP community.

FOP is an extremely rare and debilitating genetic disorder that gradually turns muscle and connective tissue into bone, forming a “second skeleton” and progressively immobilizing the body. The incidence is approximately one in one million, and experts estimate that around 8,000 individuals worldwide may be living with FOP. However, only about 900 cases are formally identified, meaning that thousands remain undiagnosed and “missing” — often living in desperation and isolation.

This Search Initiative — beginning here in the UAE — aims to change that reality by shining a light on the missing FOP cases and integrating isolated patients into a global community of care.

As part of its mission, the initiative focuses on three key pillars:
• Educate healthcare professionals to recognize early signs of FOP and diagnose it promptly.
• Include FOP awareness in medical school curricula so future physicians are trained to identify the disease early.
• Advocate for integrating FOP into newborn screening programs, as key signs — such as malformations of the big toes present at birth — may enable early identification.

“LeadPath is committed to leading this initiative in collaboration and alliance with Tin Soldiers, a global non-profit FOP outreach organization, to find and support those ‘missing’ patients living in isolation — not only in underserved areas, but even within advanced healthcare systems, where awareness for FOP remains low.” said Amer Haddadin, Founder of LeadPath and Rare Disease Advocate, speaking during the meeting. “Finding the missing FOP patients is not only a medical mission but a humanitarian one. Each hidden patient represents someone suffering in isolation or receiving improper care. We aim to find everyone with FOP wherever they are, in order to end isolation and prevent harm.”

“For too long, FOP patients have suffered in silence and isolation. Our mission is to find the missing ones and bring them into a connected global family.” said Odette Schwegler, Co-Founder, Tin Soldiers Global. “We are here to shine a light so that no one with this condition ever feels alone or beyond reach. We are proud to work closely with the LeadPath team — hand in hand and side by side — to accomplish this mission.”

Members of the public and healthcare professionals are urged to step forward. If you know someone who might have FOP — or if you want to support this effort — please contact LeadPath or Tin Soldiers Global.

Every step taken could change a life — turning isolation and desperation into hope.

For further details, reach out to our team advocate@leadpath.net Tel +971 4 248 5176