News & Events
Canadian FOP Family Conference
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Date: Saturday September 24, 2022
Time: 1:00 - 4:00 p.m.
Location: Online Zoom platform
Register: Online at cfopnfamconf22.eventbrite.ca
Join us for this virtual Canadian FOP Family Meeting where we will meet our Canadian FOP Specialists, including:
Information on Clinical Trials will be presented along with presentations from pharmaceutical companies such as Ipsen, Regeneron, Incyte, etc.
A detailed agenda will be released prior to the event.
Time: 1:00 - 4:00 p.m.
Location: Online Zoom platform
Register: Online at cfopnfamconf22.eventbrite.ca
Join us for this virtual Canadian FOP Family Meeting where we will meet our Canadian FOP Specialists, including:
- Dr. Angela Cheung, Toronto University Health
- Dr Peter Kannu, University of Alberta
- Dr. Clive Friedman, Board Certified Dentist, London, Ontario
Information on Clinical Trials will be presented along with presentations from pharmaceutical companies such as Ipsen, Regeneron, Incyte, etc.
A detailed agenda will be released prior to the event.
Health Canada approves Ipsen’s Sohonos (palovarotene capsules) as the first approved treatment for fibrodysplasia ossificans progressiva
On Jan 24, Ipsen announced the Canada approval of Sohonos (palovarotene capsules). Indicated to reduce new bone formation in adults and children (8 years and above for females and 10 years and above for males) with FOP. Sohonos is approved for both chronic use, and for flare-ups. It is the first approval for Sohonos worldwide.
Sohonos is an oral, selective RARγ agonist developed as a treatment for people living with this debilitating ultra-rare genetic disorder. The treatment was acquired by Ipsen through the acquisition of Clementia Pharmaceuticals.
Sohonos is an oral, selective RARγ agonist developed as a treatment for people living with this debilitating ultra-rare genetic disorder. The treatment was acquired by Ipsen through the acquisition of Clementia Pharmaceuticals.
FOP Italia Scientific Conference - March 20/21, 2015
FOP Italia hosted researchers and International FOP President Council Ambassador's from each country with represention from Canada, US, Sweden, France, Russia, Netherlands, Argentina, South Africa, United Kingdom, Poland and Austrailia. This was a very informative and important meeting.
Day 1 provided presentations from scientists from U of Penn, Regeneron Pharmaceuticals USA, Free University of Berlin, Harvard Medical School, University of Oxford, Leiden U Medical Centre, the Netherlands, Saitama Medical U of Japan, VU University Medical Centre Amsterdam, NL, and Universita di Genova, Italia.
Day 2 provided presentations from Betsy Bogart, IFOPA Global Research Development Director on Launching FOP Connection: a Global FOP Registry; Updates on Palovarotene Development Program, Natural History Study, and Clementia Update. The afternoon provided presentations on controversial topics "FOP and operations, ar we ready for it?" and "Surgical treatment of complete trismus in FOP: technically feasable but yet ethically right?" followed by a panel/round table of experts "fop and surgical intervention". There was an update on the European FOP Consortium and a presentation from Mikhail Belyaev, IPC Russia, IFOPA Partnering with patients and our international FOP network for a treatment followed by patients seeing the doctors and a meeting of all of the international presidents of the IFOPA - IPC which included Canada.
This was a very informative and important conference to have attended and has helped reinforce the common goal and introduce mentoring opportunities for each FOP group to grow and learn from one another and understand what research is being done globally to move us towards a cure.
Day 1 provided presentations from scientists from U of Penn, Regeneron Pharmaceuticals USA, Free University of Berlin, Harvard Medical School, University of Oxford, Leiden U Medical Centre, the Netherlands, Saitama Medical U of Japan, VU University Medical Centre Amsterdam, NL, and Universita di Genova, Italia.
Day 2 provided presentations from Betsy Bogart, IFOPA Global Research Development Director on Launching FOP Connection: a Global FOP Registry; Updates on Palovarotene Development Program, Natural History Study, and Clementia Update. The afternoon provided presentations on controversial topics "FOP and operations, ar we ready for it?" and "Surgical treatment of complete trismus in FOP: technically feasable but yet ethically right?" followed by a panel/round table of experts "fop and surgical intervention". There was an update on the European FOP Consortium and a presentation from Mikhail Belyaev, IPC Russia, IFOPA Partnering with patients and our international FOP network for a treatment followed by patients seeing the doctors and a meeting of all of the international presidents of the IFOPA - IPC which included Canada.
This was a very informative and important conference to have attended and has helped reinforce the common goal and introduce mentoring opportunities for each FOP group to grow and learn from one another and understand what research is being done globally to move us towards a cure.
Clementia Clinical Trial Pointer (for Canadian Patients)
FOP patients from Canada may be considered for enrollment into the palovarotene Phase 2 clinical trial. There are practical challenges that include travel during a flare up so that the patient arrives at the clinical site (North American sites are located in San Francisco and Philadelphia), undergoes all screening activities, and receives study medication within 7 days of the start of a flare-up. Additionally, the patient must be able to come to the clinical site for an additional 4 visits during the 12-week clinical trial period or be able to relocate for a period of time up to the full 12-weeks trial period.
The principal investigators at the clinical trial sites will make final decisions on eligibility.
Here’s what you can do to learn more about the study:
1. Review the clinicaltrials.gov detailed listing of the PVO-1A-201 protocol, especially the eligibility criteria: http://clinicaltrials.gov/ct2/show/NCT02190747
2. Review the Phase 2 clinical trial (PVO-1A-201) FAQs: http://clementiapharma.com/clinical-trials/phase-2-study-faqs/
3. Watch the Phase 2 clinical trial (PVO-1A-201) Video Interview: http://clementiapharma.com/clinical-trials/phase-2-study/#video.
4. Speak to your local physician (the one in your community that you see on a regular basis) regarding your potential participation in this Phase 2 clinical trial.
If you believe you may be eligible for the Phase 2 clinical trial for palovarotene in FOP or have more questions, call the number listed below: Clementia Call Center (US/Canada only) +1-800-750-8710.
The principal investigators at the clinical trial sites will make final decisions on eligibility.
Here’s what you can do to learn more about the study:
1. Review the clinicaltrials.gov detailed listing of the PVO-1A-201 protocol, especially the eligibility criteria: http://clinicaltrials.gov/ct2/show/NCT02190747
2. Review the Phase 2 clinical trial (PVO-1A-201) FAQs: http://clementiapharma.com/clinical-trials/phase-2-study-faqs/
3. Watch the Phase 2 clinical trial (PVO-1A-201) Video Interview: http://clementiapharma.com/clinical-trials/phase-2-study/#video.
4. Speak to your local physician (the one in your community that you see on a regular basis) regarding your potential participation in this Phase 2 clinical trial.
If you believe you may be eligible for the Phase 2 clinical trial for palovarotene in FOP or have more questions, call the number listed below: Clementia Call Center (US/Canada only) +1-800-750-8710.
Sparked Speed Dating Fundraiser (written by Marin Wallace)
On April 25, the social event organization Socielite hosted a speed-dating night, with proceeds going to the Canadian FOP Network. Given the very high odds that no one there had heard of FOP (“Isn’t that a conceited Englishman?”), I went to offer them a brief explanation.
I was given approximately 6 minutes to inform the guests about the disease (which is barely enough time for a brief definition, really). In that time, I chose to describe the horrid pain and effects of a flare-up, lay out the process in which FOP typically fuses the joints, and explain where their much-needed donations would go.
After my talk, I stayed for the event and answered any questions people had. And participated in the speed-dating activities. (No, the love of my life was not there.)
Many attendees were very curious and, if nothing else, the event introduced a lot of people to the disease. Plus, one of these people was a doctor, so there is now one more doctor in Toronto who knows what FOP is. (Do you ever stop to wonder what percentage of aware doctors have been introduced to FOP by someone who has the disease?)
Sparked raised $500 for CFOPN and increased awareness in the GTA. In my mind, this makes it a very successful event.
I was given approximately 6 minutes to inform the guests about the disease (which is barely enough time for a brief definition, really). In that time, I chose to describe the horrid pain and effects of a flare-up, lay out the process in which FOP typically fuses the joints, and explain where their much-needed donations would go.
After my talk, I stayed for the event and answered any questions people had. And participated in the speed-dating activities. (No, the love of my life was not there.)
Many attendees were very curious and, if nothing else, the event introduced a lot of people to the disease. Plus, one of these people was a doctor, so there is now one more doctor in Toronto who knows what FOP is. (Do you ever stop to wonder what percentage of aware doctors have been introduced to FOP by someone who has the disease?)
Sparked raised $500 for CFOPN and increased awareness in the GTA. In my mind, this makes it a very successful event.
Clementia Pharmaceuticals Inc. Announces Closing of $22.5 Million Series A Financing with Preeminent U.S. and Canadian Healthcare Venture Capital Funds
Company Licenses Exclusive World-Wide Rights to Palovarotene From Roche Pharmaceuticals - (January 2014)The Company also announced that it had previously entered into an exclusive licensing agreement to acquire the global rights to palovarotene, a retinoic acid receptor gamma agonist (RARγ), from Roche Pharmaceuticals that it will develop for the treatment of Fibrodysplasia Ossificans Progressiva (FOP), a rare and severely disabling disease characterized by spontaneous and recurrent episodes of heterotopic bone formation.
Stem Cells Used to Model Disease that Causes Abnormal Bone Growth
UCSF-Led Study Sheds Light on Muscle-to-Bone Transformation - (January 2014) Researchers have developed a new way to study bone disorders and bone growth, using stem cells from patients afflicted with a rare, genetic bone disease. The approach, based on Nobel-Prize winning techniques, could illuminate the illness, in which muscles and tendons progressively turn into bone, and addresses the similar destructive process that afflicts a growing number of veterans who have suffered blast injuries — including traumatic amputations or injuries to the brain and nervous system. This insidious hardening of tissues also grips some patients following joint replacement or severe bone injuries.
Clementia Biotechnology Company
Clementia is a biotechnology company focused on developing a treatment for Fibrodysplasia Ossificans Progressiva (FOP). (November 2013)Clementia is a privately-held, clinical stage biotechnology company dedicated to the development and commercialization of treatments for people living with rare diseases by exploiting the use of novel Retinoic acid receptor gamma agonists (RARγ) to address diseases of heterotopic ossification, including Fibrodysplasia Ossificans Progressiva.
Defense Department Funds Research on Rogue Bone Growth
Dr. Jeffrey Gimble, adjunct professor in Tulane University’s Center for Stem Cell Research and Regenerative Medicine, is studying the causes of heterotopic ossification. (September 2013)
22nd Annual Report of the FOP Collaborative Research Project
Read the most recent information from Drs. Kaplan, Pignolo and Shore including research highlights, future plans, talk about drug trials and more.
Canadian FOP Conference - May 31 & June 1, 2013
CFOPN hosted the 2nd Canadian FOP Conference on the weekend of May 31/June 1, 2013 at Thames Valley Children's Centre, London, Ontario. The event was a huge success with 5 presenters from Philadelphia, a local paediatric dentist and a family panel. A full write-up of the highlights will be available soon.
