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Ifopa S Global Network Turning Collaboration Into Action Helping

Leo Migdal
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ifopa s global network turning collaboration into action helping

The International FOP Association (IFOPA) has been strengthening its global connections through education, research sharing, and mentorship. These partnerships are now reflected directly in India’s on-ground efforts, where FOP Trust integrates global standards into local healthcare systems. Recent outreach to pediatricians and hospitals across Tamil Nadu and Karnataka echoes IFOPA’s commitment to early recognition and structured referral. With every conversation between local doctors and FOP Trust field staff, awareness grows—bringing families closer to accurate diagnosis and reliable treatment. Takeaway: Global collaboration fuels local change.At FOP Trust India, we turn IFOPA’s shared knowledge into compassionate care for Indian families. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/

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]

Families living with FOP often struggle with uncertainty, especially during flare-ups. The International FOP Association (IFOPA) bridges this gap by offering global support tools that guide safe decisions. From emergency medical cards to step-by-step flare-up protocols, IFOPA resources are designed to prevent harmful actions like biopsies or nerve blocks. In September, families like Shraya’s from Nepal benefitted from these tools, using them to share accurate guidance with local doctors. Beyond resources, IFOPA connects families through international webinars, family networks, and online communities, ensuring no family feels isolated. By combining knowledge with connection, IFOPA gives families both clarity and confidence.

To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/ Wordly launches Voice Transcripts for AI Dubbing — Learn More The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a medical nonprofit dedicated to supporting families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic condition. The organization hosts a variety of virtual sessions every year including the Annual FOP Family Gatherings, Ongoing Education Programs, and Family Welcome Calls. The Family Gatherings garner an average of 450-500 participants every year, while the Welcome Calls and other smaller sessions see an average of 5-15 participants. IFOPA struggled to engage around 40% of its audience members who don’t speak or understand English.

The gap impeded their mission to provide comprehensive support and a sense of belonging to all families facing FOP. As a medical nonprofit, IFOPA is very budget-conscious. They could not afford a costly translation tool or human interpreters. They needed a solution that was affordable, easy to set up and use, and provided accurate audio and written translation in numerous languages. The International FOP Association (IFOPA) continues to strengthen global collaboration through partnerships with research centers and rare disease networks.These initiatives are helping accelerate clinical trials, improve data accuracy, and ensure better representation from developing... Through shared registries and virtual consultations, IFOPA enables doctors to access the latest FOP Treatment Guidelines — ensuring families receive consistent care worldwide.In India, this collaborative spirit is mirrored by FOP Trust India and...

Vrisha Madhuri contribute valuable insights to the global FOP data pool. Takeaway:Every partnership expands access, accelerates research, and strengthens hope for FOP families. At FOP Trust India, we proudly echo IFOPA’s global mission — turning connections into care for every patient. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/

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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...

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