"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

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.

Canada is the first country to approve a drug to lessen the ossification of muscle during an FOP flare-up and there are other potential compounds under development in the pipeline which could be useful for 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.
​NEWS - Registration is now open for the Canadian FOP Network Family Meeting 2025!

Dates:                 June 12 and 13, 2025
Location:           Toronto, Ontario
Venue:                Courtyard Marriott Toronto Downtown Hotel
Price:                  Registration is FREE!
(*All attendees, including family, caregivers, and care providers, must register)
We are super excited to have the following expert presentations at the Meeting:
  • Dr. Angela Cheung speaking on recent developments in FOP
  • Dr. Peter Kannu:  “Bridging Science and experience: Stem Cell Models of FOP and Understanding the Patient Journey through Qualitative Research”
  • Dr. Christiaan Scott:  “Making the Diagnosis: Lessons from the Tin Soldiers Patient Finding Mission”
  • Dr. Clive Friedman:  “Cranio Facial Respiratory Complex - Common Implications and Risk Management Strategies”
  • Dr. Toshi Yokota:  “Advances in Allele-Specific Therapies for FOP: Targeting the ACVR1 206H Mutation”
Click here to register!

The Canadian FOP Network has a block of rooms at the hotel with a special group rate. Make your reservation by clicking below!

Important notes:
  • The link below shows the event as “University Health Network Meeting”. This is the right one, so not to worry!
  • You can select a wheelchair-accessible room at the “Select a Room and Rate” page after starting the booking process. Alternatively, call 1-800-847-5075 and mention the June 12-13 University Health Network Meeting.
  • Nightly room charge and all associated expenses are the responsibility of the person booking the room.

Click here to book your hotel reservation!

BREAKING NEWS! The Canadian FOP Network is pleased to offer a travel expenses grant of $250 per night, maximum $500, per FOP patient or their family!

All you have to do for the grant is stay at the hotel and attend the meeting, then show us your hotel bill afterward! Contact us at [email protected] if you have any questions.
Our Gold Tier sponsors:
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​Tin Soldiers - 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 40 in Canada. To help patients access medical therapies and treatment in Canada or share important drug trial information we need to have a complete 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.

Past EVENTS

LONDON
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