Crandi

International F O P Association Inc Idealist

Leo Migdal
-
international f o p association inc idealist

Founded in 1988 by Jeannie Peeper, a woman with FOP, the IFOPA was originally established because Ms. Peeper wanted to bring people with FOP together. Today, the organization has grown to include members across the globe. The IFOPA also supports FOP research at the University of Pennsylvania School of Medicine at a rate of more than $500,000 annually and is a source of invaluable support and comfort to those who... Our 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. Our vision is a cure for FOP, accessible worldwide.

The International FOP Association is a 501c3 non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia ossificans progressiva (FOP). 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] 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... Want updates when International FOP Association has new information, or want to find more organizations like International FOP Association?

© 2025 Nonprofit Metrics LLCTerms of Service and Privacy Policy The International FOP Association (IFOPA) champions global FOP support through emotional, educational, and research-driven initiatives. It doesn’t just serve as a medical resource; it stands as a global connector. Families from over 60 countries have found guidance, friendship, and essential resources through this organization. From its humble origins in 1988, IFOPA has blossomed into an international network of support for those affected by Fibrodysplasia Ossificans Progressiva (FOP). One of IFOPA’s most important roles is bridging geographical divides.

Through programs like the International President’s Council and the Global Gene Family Gathering, families and caregivers from various cultures and backgrounds come together to share, learn, and support one another. By facilitating cross-border conversations and educational events, IFOPA ensures that no one has to face FOP in isolation. In addition to emotional support, IFOPA also provides robust practical resources. Their Emergency Preparedness Guide, translated into several languages, helps caregivers and healthcare workers respond appropriately during medical situations. Online toolkits, webinars, and a private social community empower individuals with accurate, up-to-date information. Beyond families, IFOPA also connects researchers and clinicians.

It plays a key role in coordinating global scientific efforts and building collaborative spaces where data and insights are freely shared. By acting as a central hub, the organization accelerates both awareness and research progress. Ultimately, IFOPA’s strength lies in its ability to create a sense of belonging. Its commitment to global FOP support ensures that families, researchers, and healthcare professionals remain connected and informed. For a condition as rare and isolating as FOP, this connection means everything. Through its wide-reaching programs and compassionate leadership, IFOPA is turning a rare diagnosis into a shared journey of hope.To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary? EIN: 592918100 ✦ North kansas city, MO ✦ Designated as a 501(c)(3) International Fop Association Inc, based in North Kansas City, Missouri, is a dedicated nonprofit organization primarily focused on funding research to discover a cure for Fibrodysplasia Ossificans Progressiva (FOP).

The majority of their budget is allocated towards research programs and services, with significant investments in the FOP Registry, a crucial tool for scientific research, and research grants. They also support research initiatives at institutions like the University of Pennsylvania and the University of Massachusetts. Additionally, the organization provides support, connections, and advocacy for individuals with FOP and their families, raising awareness worldwide. Charity Navigator Rating: 99% (Four-Star out of Four Stars) The International Fop Association Inc has received a commendable Four-Star rating from Charity Navigator, reflecting its high standards in accountability and finance. With a score of 100 in this category, the organization demonstrates robust governance, including an entirely independent board and strong audit practices.

Its financial health is underscored by a low liabilities-to-assets ratio and effective program expense use, indicating a commitment to maximizing resources for its mission.

People Also Search

Founded In 1988 By Jeannie Peeper, A Woman With FOP,

Founded in 1988 by Jeannie Peeper, a woman with FOP, the IFOPA was originally established because Ms. Peeper wanted to bring people with FOP together. Today, the organization has grown to include members across the globe. The IFOPA also supports FOP research at the University of Pennsylvania School of Medicine at a rate of more than $500,000 annually and is a source of invaluable support and comfo...

The International FOP Association Is A 501c3 Non-profit Organization Supporting

The International FOP Association is a 501c3 non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia ossificans progressiva (FOP). The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communicatio...

Peeper. Diagnosed With FOP In 1962 At Age Four, Peeper

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 ...

With An Initial Association Membership Of Eleven, Peeper Became The

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 Eilee...

By 2020, The Organization Had Over 500 Members From 57

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...