The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
1460 Bolingbrook Drive
Columbus, OH 43228 USA
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.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.