Tin Soldiers Outreach NPC
Purpose: The purpose of Tin Soldiers FOP Outreach is to roll out a global awareness and patient identification program.
Vision: To identify every person with FOP who is currently undiagnosed and deliver education to those living with a diagnosis. The program provides education and support for patients, medical professionals, and the general public to raise FOP awareness and offer access to resources, a network of support and information on medical care.
Fibrodysplasia Ossificans Progressiva (FOP) is a catastrophic sabotage of the body’s muscular-skeletal system. It is a devastating genetic condition that slowly turns muscle, ligaments, and tissue into bone, sending its victims into a spiral towards immobility.
Children born with FOP progressively grow extra bone which forms a second skeleton - locking joints and ultimately rendering movement near impossible.
- Malformation of the big toes is visible at birth
- Flare-ups can worsen the condition and occur spontaneously or following physical trauma such as childhood immunizations, falls, surgery, biopsy or viral illnesses
- Rogue bone growth progressively restricts movement
- The exact rate of progression is unpredictable
Due to the rarity of the condition, even the medical fraternity’s knowledge on the indicators and treatments are limited. It is often misdiagnosed as cancer and medical interventions (such as biopsies) do more harm than good.
There is currently, no known treatment or cure for FOP, but four clinical trials are underway.
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