Progressive Osseous Heteroplasia Association

The Progressive Osseous Heteroplasia Association (POHA) is a non-profit, voluntary organization dedicated to raising funds for research into finding appropriate treatment and a cure for progressive osseous heteroplasia (POH). POH is an extremely rare disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification). The disorder first appears as areas of patchy bone formation (ossification) on the skin during infancy; heterotopic ossification progresses to involve superficial and deep connective tissues, areas of fat beneath the skin (subcutaneous fat), muscles, tendons, ligaments, and the bands of fibrous tissues that support muscle (fascia). In addition to serving as a patient education organization, POHA strives toward an additional goal, to raise sufficient funds to make the medical world more aware of POH. Established in 1995, the association produces educational materials including a handbook entitled “What is POH? A Guidebook for Families,” reprints of scientific and medical journal articles about POH, and a videotape of a 1995 symposium on fibrodysplasia ossificans progressiva (FOP), a similar but distinct rare disorder.