Charity information

FOP Friends

FOP turns children into human statues. A healthy mind locked inside a frozen body. A cure is near, but we need to keep research funded to get there in time. This is our goal.

Founded 2012

  • Mission statement

    Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across the joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. FOP turns otherwise healthy people into human statues: a healthy mind locked inside a frozen body.

    FOP Friends' aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by financially supporting current and future research projects within the United Kingdom and in the United States of America.

    Fibrodysplasia Ossificans Progressiva (FOP) causes progressive debilitation eventually leading to early death. FOP research projects have far reaching implications for not only those with FOP but also those with common disorders such as fractures, osteoporosis, osteoarthritis and other forms of heterotopic ossification that occur through trauma such as military and sports injuries, paraplegia, and post-hip surgery complications.

    In particular, soldiers who suffer combat injuries are prone to heterotopic ossification, a severely debilitating complication. An estimated 64% of soldiers with blast injuries develop heterotypic ossification, compromising functional mobility and prosthesis use.

  • Aims

    FOP Friends aims to:

    • The relief of distress and sickness for those affected by Fibrodysplasia Ossificans Progressiva (FOP).
    • To raise public awareness and understanding of Fibrodysplasia Ossificans Progressiva (FOP) and to promote education and research into the study and cure of FOP and related conditions.
    • To support charities and organisations in the UK and abroad by undertaking charitable activities to fund research; and to provide help, support, care and treatment for people affected by FOP.
    • To support organisations researching treatments and a cure for FOP and related conditions.
    • Preventing Misdiagnosis.
  • Overview

    Established: March 2012

    Registered Charity Number: 1147704

    Board members: 7

    Part time staff: 2

    Phone number: 0300 323 9989

    Address: 1 Cumberland RoadSaleCheshire M33 3FR

    View charity accounts on the Charity Commission website