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Newsroom

OUR MEDIA HIGHLIGHTS

The Philidelphia Inquirer | 25 February 2020

A crippling disease called FOP is so rare, it usually goes undiagnosed.

University of Pennysylvania physician Frederick Kaplan provides commentary on 'Tin Soldiers' as the world's leading FOP researcher. We need to find everyone with FOP wherever they are to end isolation, to prevent harm, to lessen...

Daily Maverick | 19 October 2019

Tin Soldiers: Far more than a movie, it’s a global call

After nine months of filming, Odette Schwegler finally wrapped up filming a story that she hoped would do more than entertain, and instead start a global search for those living with a rare but challenging condition known as...

Good Things Guy | 10 July 2021

A Search for Some of the World’s Rarest People is on and You can Help!

We’ve all had a little taste of isolation this past year – but the meaning of ‘lockdown’ while affecting our lives in every way – is temporary. Yet this experience has allowed us to wrap our heads just for a moment, around the isolation...

IOL | 9 July 2021

Tin Soldiers on a mission to find people living with rare bone disease in Africa

Fibrodysplasia ossificans progressiva (FOP) is one of the rarest genetic conditions which slowly turns muscle, ligaments, and tissue into bone, making simple tasks such as walking, sitting, reaching and moving difficult...

Knysna-Plett Herald | 17 October 2019

Hollywood Hails SA Documentary Film

One of the films to be screened at the inaugural Knysna Film Festival has bagged a prestigious honourable mention in the Feature Documentary category at the 2019 Hollywood Independent Filmmaker Awards on 10 October...

Northcliff Melville Times | 16 October 2019

The Road to Tin Soldiers

South African feature film, Tin Soldiers, has travelled internationally with the aim to find people who live with the rare muscle disease fibrodysplasia ossificans progressiva or FOP.  Directed by Emmarentia-based director Odette Schwegler...

City Press | 10 October 2019

SA's Tin Soldier Tells His Tale

Thozamile Mciki was just eight months old when his body began to build a second skeleton. Of course, he doesn’t remember this because he was only a baby when this started, but, today, at the age of 53, his entire body has...

Sowetan Live | 7 October 2021

Here's how this activist is taking his fight against his rare disease to the big screen

Thozamile Mciki suffered a great injury at just eight months of age. While alone in the bedroom, he was injured after falling off the bed and onto the cold, hard floor. But little did his family know that this would soon be the reason for...

Times Live | 6 October 2019

Bravery of Humans who are 'Tin Soldiers' Trapped in a Second Skeleton

Imprisoned by a second skeleton, 53-year-old Thozamile Mciki is a “tin soldier” with a heart. Mciki, of Gugulethu in Cape Town, is the oldest known patient in Africa with fibrodysplasia ossificans progressiva (FOP). He is one of 900 people...

Social TV | 9 July 2021

The search for some of the world’s rarest people is on and you can help

We’ve all had a little taste of isolation this past year – but the meaning of ‘lockdown’ while affecting our lives in every way, is temporary. Yet this experience has allowed us to wrap our heads just for a moment, around the isolation of someone living...

Die Groot Ontbyt | 12 July 2021

YouTube | Odette Schwegler, Seldsame Siekte FOP

Vervaardiger en filmmaker Odette Schwegler kuier saam om oor haar projek wat fokus op die seldsame siekte FOP te gesels...

Rare Revolution | May 2021

Charity Spotlight | Stand to attention for the Tin Soldiers

ACADEMIC MENTIONS

Oxford Academic | 11 November 2021

Abstract Tin Soldiers Global FOP Patient Search

While looking for one, you may find another: Tin Soldiers and the search for undiagnosed individuals with Fibrodysplasia Ossificans Progressiva (FOP)...

BMC | 5 June 2024

Pediatric Rheumatology Education: The Virtual Frontier a Review

Many children with rheumatic and musculoskeletal diseases are unrecognized. Identifying these children requires health care provider awareness, knowledge...

CONGRESS FEATURES

PReS EU | 2021

Tin Soldiers Global FOP Patient Search

The Tin Soldiers Global FOP Patient Search program is aimed at finding the thousands of people living with a rare condition and without a diagnosis; it fills the need to find and identify them and connect them to a pathway to care...

USEFUL DOWNLOADS

Annual Report

Fact Sheet

Digital Diagnostic Handbook

NEWS

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OTHER NEWS ON FOP

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