Clementia Pharmaceuticals Highlights Role of Patient Community in the Fight Against Fibrodysplasia Ossificans Progressiva (FOP)
Company to Host Webcast to Pay Tribute to FOP Community and Recognize Rare Disease Day
MONTREAL, Feb. 24, 2015 /PRNewswire/ -- Clementia Pharmaceuticals, Inc. will observe Rare Disease Day 2015 by hosting a webcast to commend patients and caregivers for their role in advancing basic science, clinical research and care for fibrodysplasia ossificans progressiva (FOP). The event will be held on Thursday, February 26, from 9:30 a.m. -10:45 a.m. Eastern Time and will feature perspectives from the International FOP Association (IFOPA), leading researchers and physicians on how the patient community has enhanced their knowledge of the intricacies of FOP and furthered efforts to find a potential treatment.
"Patients are the central force behind the search for a treatment for this devastating disease," said Clarissa Desjardins, Ph.D., Chief Executive Officer of Clementia. "This webcast is an opportunity to pause and honor their commitment and allow their inspiration to power us forward."
FOP is a rare, severely disabling congenital myopathy characterized by painful, recurrent episodes of soft tissue swelling (flare-ups) that result in the formation of new, abnormal (heterotopic) bone in muscles, tendons and ligaments. This heterotopic bone progressively restricts movement by locking joints and leads to cumulative loss of function and disability.
Featured speakers at the event include:
- Nancy Sando, Founding Legacy Member, International FOP Association
- Michael Zasloff, M.D., Ph.D., Dean of Research and Translational Science at Georgetown University Medical Center
- Eileen Shore, Ph.D., Cali and Weldon FOP Research Professor, Departments of Orthopaedics and Genetics, Perelman School of Medicine, University of Pennsylvania
- Joseph Kitterman, M.D., Professor Emeritus, Department of Pediatrics, University of California, San Francisco (UCSF) School of Medicine
- Maurizio Pacifici, Ph.D., Director of Orthopedic Research, The Children's Hospital
of Philadelphia
Clementia invites patients, caregivers, advocates and researchers worldwide to watch the webcast by visiting www.clementiapharma.com/RDD2015. A replay of the webcast will be available approximately 24 hours after the event.
Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year), the rarest date on the calendar, to underscore the nature of rare diseases and the challenges patients face. The worldwide awareness day was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations, including Canada and the United States. For more information, visit www.rarediseaseday.org, www.rarediseaseday.us or www.raredisorders.ca.
About Fibrodysplasia Ossificans Progressiva (FOP)
FOP is a rare, severely disabling congenital myopathy characterized by painful, recurrent episodes of soft tissue swelling (flare-ups) that result in new, abnormal bone formation in muscles, tendons, and ligaments. Flare-ups begin early in life and may occur spontaneously or after soft tissue trauma, vaccinations, or influenza infections. Recurrent flare-ups progressively restrict movement by locking joints, leading to cumulative loss of function and disability. FOP is caused by a point mutation in the ALK2/BMP type I receptor; the mutation results in over- activity of the receptor. Virtually all known patients have the same point mutation and have congenital malformations of the big toes at birth. FOP is thought to affect less than one individual for every million lives.
About Clementia Pharmaceuticals Inc.
Clementia is a privately held, clinical-stage biopharmaceutical company focused on developing and commercializing innovative therapies for people living with rare diseases. The company is advancing a novel retinoic acid receptor gamma agonist to address diseases of heterotopic ossification, including fibrodysplasia ossificans progressiva. For more information, please visit www.clementiapharma.com.
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SOURCE Clementia Pharmaceuticals, Inc.
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