Canadian FOP Network

Our Mission

Dedicated to raising awareness and research funds for a rare bone disease called Fibrodysplasia Ossificans Progressiva (FOP).

Videos from our Global FOP Community

In these rarest of children mother nature has hidden secrets that, if uncovered, would impact all other diseases that affect the masses -
Dr Fred Kaplan

What is Fibrodysplasia Ossificans Progressiva (FOP)?

FOP turns children into human statues: a healthy mind locked inside a frozen body. It is an ultra-rare orphan disease which progressively turns muscles and connective tissue to bone, permanently fusing their joints and causing immobility. The malformed big toes and presentation of mysterious swellings and/or stiffness are easily identified signs but often missed due to lack of awareness.

There are new research initiatives on the horizon for fibrodysplasia ossificans progressiva and trial preparations have begun and this research will impact other more common medical conditions that affect much larger groups of people. Researchers are also looking at what positive impact FOP research/treatments may have for people with childhood brain cancer, osteoporosis, chronic anemia, stem cell therapy, atherosclerosis, vascular calcification and heterotopic ossification experienced by wounded soldiers and a percentage of hip surgery patients.

So please help, because the hope of children and adults with FOP rests with people like you, people who care.

2017 in Review

Thank you everyone for all your hard work supporting our shared mission of finding a cure for FOP. This was a big year and we are excited to share that we were able to fund $27,000 for FOP research at the U of Alberta, we hosted a Canadian FOP Conference, bringing Canadian patients and FOP specialists together, and have just made a $70,000 USD donation to U of Penn via the Ian Cali Endowment Fund for FOP research

Merry Christmas and a Happy New Year from your CFOPN Board to all our families, donors, researchers, pharma and community. May 2019 be the best year yet!

Annual General Meeting

Date: Sunday December 30, 2018
Time: 12:00 - 2:00 pm (EST)
Location: Head Office, 101 Brixham Cr, London, ON or online via Zoom online
Register: online at https://cfopnagmdec30.eventbrite.ca to receive a link to the meeting in your confirmation email.
Questions: please direct to Carrie at canadianfopnetwork@live.com

This is an Annual Meeting of the Board and members to review the audited financial statements and other business of the charity. Voting will occur at this meeting for officers of the charity and Board members. Nominations from the floor will be accepted.
NOTE: We have pushed back the date of our AGM in acknowledgement of the geographical distance of our members across Canada. We now have Zoom online meetings tool for those who wish to attend via their laptops or cells.

CLINICAL TRIALS IN CANADA