International FOP Association

International FOP Association (IFOPA) is a non-profit organization dedicated to funding research, providing support, and disseminating information to improve the quality of life for individuals affected by Fibrodysplasia Ossificans Progressiva (FOP). FOP is a rare and disabling genetic condition characterized by the abnormal development of bone in muscles, tendons, and other connective tissues, leading to significant physical disability through the progressive loss of mobility.

History

The International FOP Association was established in 1988 by Jeannie Peeper, a person with FOP, who recognized the need for a support network for individuals and families dealing with the condition. Since its inception, the IFOPA has grown into a global community, connecting patients, families, researchers, and healthcare professionals from around the world.

Mission

The mission of the IFOPA is threefold: to fund and facilitate research aimed at finding a cure for FOP, to provide support and resources to individuals with FOP and their families, and to raise awareness about the condition among the general public and medical communities. Through its efforts, the IFOPA aims to foster a better understanding of FOP, improve patient care, and ultimately find a cure for the disease.

Research and Funding

One of the primary objectives of the IFOPA is to support research into the causes, treatment, and eventual cure of FOP. The organization funds scientific research grants and collaborates with pharmaceutical companies and academic institutions to advance FOP research. It also hosts international scientific conferences to facilitate the exchange of information and ideas among researchers.

Support and Resources

The IFOPA provides a wide range of support and resources for individuals with FOP and their families. This includes educational materials, guidance on managing the condition, and information on the latest research and treatment options. The association also organizes patient and family gatherings, offering a platform for sharing experiences and fostering a sense of community among those affected by FOP.

Awareness and Advocacy

Raising awareness about FOP is a critical part of the IFOPA's mission. The organization works to increase public understanding of the condition and advocates for the needs of the FOP community. This includes engaging with policymakers to ensure access to care and support for individuals with FOP, as well as promoting the inclusion of FOP in rare disease research and funding initiatives.

Conclusion

The International FOP Association plays a vital role in the global effort to combat Fibrodysplasia Ossificans Progressiva. Through its commitment to research, support, and advocacy, the IFOPA continues to make significant strides towards improving the lives of those affected by FOP and moving closer to a future without this debilitating condition.

International_FOP_Association

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  International FOP Association Logo
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  Jeannie L. Peeper, Founder of IFOPA
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  Dr. Frederick S. Kaplan, Medical Advisor
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  Dr. Eileen Shore, Researcher