"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, International FOP Specialist

What is Fibrodysplasia Ossificans Progressiva (FOP)?

​FOP Turns Children into Human Statues

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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.

Annual General Meeting - Nov 6, 2022

Searching for the Undiagnosed around the world and in Canada

Now more than ever we need to reach out and find all the Canadian FOP patients. New research estimates 1 in 1 million is the prevalence of FOP births or 34 in Canada. To help patients access medical therapies and treatment in Canada or share important drug trial information we need to have a fulsome patient registry. Please see the clip below on the Tin Soldier initiative and the important work they are doing globally to bring awareness and education.

EVENTS

CALGARY
FOP Stampede BBQ & Dessert Contest

A new twist to their annual fundraising drive and this fun BBQ and dessert cookoff raised $22,000 in proceeds being donated to CFOPN!

LONDON
4th Annual
Brooke Connell Golf Tournament

DATE TBA
9am Registration
10am Shot Gun Start
4:30pm Cocktails & Guests arrive
5:30pm Dinner Buffet
More information & Flyer

NEW MARKET
Ride & Walk to Cure FOP

Thank you to everyone for another fantastic event and over $13,000 in proceeds being donated to CFOPN!

SAULT STE MARIE
Annual 5k Run/Walk for FOP

Thank you to our Soo families and community who come out each year for this event! All the hard work paid off again this year. Total amount raised TBA soon.

Videos from our Global FOP Community

 Our Expert Partner - The International FOP Association (IFOPA)

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You can also visit Focus-on-FOP in Canada for up-to-date information