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For Medical Professionals Ifopa International Fop Association

Leo Migdal
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for medical professionals ifopa international fop association

What can you do for your patients with FOP? What can you do for your patients with FOP? FOP patients and their caregivers should be educated on the importance of preventing heterotopic ossification (HO), where possible. This includes avoidance of medical procedures that could lead to a (including surgery, biopsies, intramuscular injections and invasive dental procedures) and prophylactic measures against falls, respiratory decline and viral infections.1 Key recommendations from the International Clinical Council (ICC) guidelines1*

1520 Clay St, Ste H2, North Kansas City, MO 64116North Kansas City, Missouri, United States The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for... Their mission is to eliminate FOP as a health concern through education, research, advocacy, and support. Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as... The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). IFOPA's mission is to fund research to find a cure for FOP while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide.

IFOPA is governed by a volunteer board of directors which may range in number from 9 to 15, at least one of whom must have FOP. The association's location is 1520 Clay St., Suite H2, North Kansas City, MO, 64116, part of the Kansas City, Missouri metropolitan area. IFOPA was founded in 1988 by Jeannie L. Peeper. Diagnosed with FOP in 1962 at age four, Peeper graduated from college in 1985 with a bachelor of arts degree in social work. Michael Zasloff, then at the National Institutes of Health (NIH), was studying FOP and put Peeper in contact with all FOP patients known to the NIH, eighteen in total, to whom Peeper mailed a...

Eleven responded. In early 1988, Peeper started a newsletter called FOP Connection in collaboration with Nancy Sando, one of the respondents. In June of that year, Peeper founded the IFOPA to facilitate fund raising for FOP research and generally create awareness of the disease. With an initial association membership of eleven, Peeper became the inaugural president and Sando was appointed vice president. In 1989, Peeper collaborated with the University of Pennsylvania to support establishment of the FOP Collaborative Research Project, and in 1992, the Center for Research in FOP and Related Disorders, efforts spearheaded by Drs. Frederick Kaplan, Michael Zasloff, and Eileen Shore.

Throughout the 1990s, IFOPA organized two international symposiums on FOP and several FOP family meetings. In the first decade of the 2000s, two more international symposiums were hosted by IFOPA, and other FOP scientific and family meetings were held in Argentina, Brazil, Canada, France, Germany, Italy, The Netherlands, Sweden,... In April 2006, the Center for Research in FOP discovered the FOP gene. By 2020, the organization had over 500 members from 57 countries and had partnered with FOP organizations and communities on all continents except Antarctica. In 2010, IFOPA implemented the first annual Jeannie L Peeper Awards to recognize philanthropy, community involvement, international leadership and youth leadership in support of the FOP cause. Also in 2010, the Central Florida Chapter of the Association of Fund Raising Professionals named Peeper as winner of the 2010 Lifetime Achievement Award for her work in founding and establishing the IFOPA.

A gathering of FOP families, supporters, researchers, and pharmaceutical industry representatives was held in Orlando in late 2013 on the 25th anniversary of the Association. IFOPA hosted FOP drug development forums in 2014 and 2016 in Boston, 2017 in Sardinia Italy, and 2019 in Orlando. The forums brought together FOP experts to discuss the latest research, solve drug development challenges and strengthen the global network of research collaborations. The 2019 Drug Development Forum attracted 154 attendees from 19 countries including researchers, clinicians, biotech and pharmaceutical company representatives, regulators, advocates and people living with FOP.[1] The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper, one of the first individuals diagnosed with Fibrodysplasia Ossificans Progressiva (FOP). From a small patient-led initiative, IFOPA has evolved into a global organization that champions FOP awareness, supports groundbreaking research, and empowers patients and families around the world.

FOP is one of the rarest and most disabling genetic conditions. It causes muscles, ligaments, and other soft tissues to gradually turn into bone, leading to loss of mobility and severe complications. Because of its rarity—affecting approximately 1 in 2 million people—most doctors are unaware of its symptoms, leading to frequent misdiagnoses. IFOPA fills this crucial gap. It provides multilingual educational materials, maintains the largest international FOP Registry, supports families through peer connection programs, and funds research into potential treatments. Its resources help newly diagnosed patients navigate the complex path of FOP care.

One of IFOPA’s greatest achievements is the FOP Registry. This platform gathers real-world data from patients globally, helping researchers track patterns and improve clinical trial designs. IFOPA also helps connect patients to trials and maintains close partnerships with pharmaceutical companies working on FOP therapies. In addition, IFOPA organizes awareness events like FOP Awareness Day (April 23), distributes emergency medical guides, and trains healthcare professionals to recognize early signs of FOP. They are not only spreading awareness—they are shaping the future of rare disease care.

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What can you do for your patients with FOP? What can you do for your patients with FOP? FOP patients and their caregivers should be educated on the importance of preventing heterotopic ossification (HO), where possible. This includes avoidance of medical procedures that could lead to a (including surgery, biopsies, intramuscular injections and invasive dental procedures) and prophylactic measures ...

1520 Clay St, Ste H2, North Kansas City, MO 64116North

1520 Clay St, Ste H2, North Kansas City, MO 64116North Kansas City, Missouri, United States The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for... Their mission is to eli...

IFOPA Is Governed By A Volunteer Board Of Directors Which

IFOPA is governed by a volunteer board of directors which may range in number from 9 to 15, at least one of whom must have FOP. The association's location is 1520 Clay St., Suite H2, North Kansas City, MO, 64116, part of the Kansas City, Missouri metropolitan area. IFOPA was founded in 1988 by Jeannie L. Peeper. Diagnosed with FOP in 1962 at age four, Peeper graduated from college in 1985 with a b...

Eleven Responded. In Early 1988, Peeper Started A Newsletter Called

Eleven responded. In early 1988, Peeper started a newsletter called FOP Connection in collaboration with Nancy Sando, one of the respondents. In June of that year, Peeper founded the IFOPA to facilitate fund raising for FOP research and generally create awareness of the disease. With an initial association membership of eleven, Peeper became the inaugural president and Sando was appointed vice pre...

Throughout The 1990s, IFOPA Organized Two International Symposiums On FOP

Throughout the 1990s, IFOPA organized two international symposiums on FOP and several FOP family meetings. In the first decade of the 2000s, two more international symposiums were hosted by IFOPA, and other FOP scientific and family meetings were held in Argentina, Brazil, Canada, France, Germany, Italy, The Netherlands, Sweden,... In April 2006, the Center for Research in FOP discovered the FOP g...