International FOP Association

See schedule omedical research: with a vision to cure Fop, the majority of the ifopa's budget is spent on research programs and services. The greatest investment is the Fop registry which is the only registry for Fop patients in the world and a critical tool for scientific research. The ifopa also dedicates a significant portion of funding to research grants, including grants to the university of Pennsylvania's center for research in Fop and related disorders. Additionally, the ifopa funds grants through the ifopa's act (accelerating cures and treatments) for Fop grant program and gene therapy at the university of Massachusetts. The ifopa also supports the Fop biobank and a preclinical drug testing program in partnership with the mayo clinic.

See schedule opublic awareness: Fop is an ultra-rare disease. Very few people have heard of Fop, let alone know all that it entails - including health care professionals. Increasing awareness among health care professionals is critical to ensure that patients are diagnosed early, avoid severe complications caused by misdiagnosis, get on the path to the best medical care and have an opportunity to participate in clinical studies and trials. Through our website where we list continuing medical education programs on Fop for health care professionals, the Fop family gathering and various partnerships, the ifopa works to increase awareness and education of Fop among health care professionals. Since 2021, we have partnered with members of the International president's council to launch a global Fop awareness day campaign which included social media posts and videos shared around the world during the month of april.

See schedule oeducation and support programs: support, both functional and emotional, is imperative to the health of those living with Fop as well as their families. Starting in 2018, the ifopa began a major expansion of our programs and services for Fop families. In addition to one-on-one support provided when families are newly diagnosed or are looking for tools, tips and home modifications to help them live more independently through our ability toolbox program, the ifopa has developed two programs - resilient living and the advocacy series - to support the mental health and problem-solving skills of Fop families. Since 2016, the ifopa has offered an annual Fop family gathering which became global in scope starting in 2020. Through the ifopa's International president's council we work to coordinate programs and services in countries around the world. Community social events, including the ifopa's friendship over pages book club and bereaved families online meetups, offer families the opportunity to stay connected and support one another. Finally, educating patients and families about clinical studies and trials is core to our mission to advance the development of the first-ever treatments for Fop.