International F O P Association Inc

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. Our one-on-one support often begins when families are newly diagnosed, or 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. Our signature event for families is the family gathering where 25-30 families from across the united states come to learn, connect and interact with fop experts. Through the ifopa's international presidents' council we work to coordinate programs and services in countries around the world. The ifopa also started a variety of online support groups for various audiences including adults with fop, caregivers and bereaved families, and offers participants 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.

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 presidents' 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.