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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). IFOPA’s mission is to fund research to find a cure for FOP while supporting individuals and their families through education, public awareness and advocacy. IFOPA is governed by a volunteer board of directors which may range in number from 9 to 15, at least one of whom must have FOP. The association's office is located in Casselberry, Florida, a suburb of Orlando USA. Office staff consists of the Operations Manager, Communications and Membership Manager, and Accountant. The IFOPA URL is ==Founding and history== IFOPA was founded in 1988 by Jeannie L. Peeper. Diagnosed with FOP in 1962 at age four, Peeper graduated from college in 1985 with a bachelor of arts degree in social work. Unaware of others with her condition, Peeper discovered that Dr. Michael Zasloff, then at the National Institutes of Health (NIH), was studying FOP. Zasloff put Peeper in contact with all FOP patients known to the NIH, eighteen in total, to whom Peeper mailed a questionnaire. Eleven responded. In early 1988, Peeper started a newsletter called ''FOP Connection'' in collaboration with Nancy Sando, one of the respondents. In June of that year, Peeper founded the IFOPA to facilitate fund raising for FOP research and generally create awareness of the disease. With an initial association membership of eleven, Peeper became the inaugural president and Sando was appointed vice president. In 1989, Peeper collaborated with the University of Pennsylvania to support establishment of the FOP Collaborative Research Project, and in 1992, the Center for Research in FOP and Related Disorders, efforts spearheaded by Drs. Frederick S. Kaplan, Michael Zasloff, and Eileen M. Shore. Throughout the 1990s, IFOPA organized two international symposiums on FOP and several FOP family meetings. During this period the association grew both in terms of fund raising and membership nationally and internationally. In the first decade of the 2000s, two more international symposiums were hosted by IFOPA, and other FOP scientific and family meetings were held in Argentina, Brazil, Canada, France, Germany, Italy, The Netherlands, Sweden, and the UK. In April 2006, IFOPA celebrated the FOP Lab’s discovery of the FOP gene. By 2014, the organization had over 500 members from 57 countries and had partnered with FOP organizations and communities in Argentina, Australia, Brazil, Canada, France, Germany, India, Italy, Japan, Malaysia, The Netherlands, People's Republic of China, Poland, Russia, Serbia, South Africa, Spain, Sweden and the United Kingdom. See External Links at the bottom of this article for links to FOP associations in many of the foregoing countries. In 2010, IFOPA implemented the first annual Jeannie L Peeper Awards which recognize outstanding philanthropy, community involvement, international leadership and youth leadership in support of the FOP cause. Also in 2010, the Central Florida Chapter of the Association of Fund Raising Professionals named Peeper as winner of the 2010 Lifetime Achievement Award for her work in founding and establishing the IFOPA. A gathering of FOP families, supporters, researchers, and pharmaceutical industry representatives was held in Orlando in late 2013 to celebrate the 25th anniversary of the Association. In early 2014, in recognition of the explosion of worldwide FOP research since the gene discovery in 2006, and with the prospect of clinical drug trials in the near future, IFOPA appointed Betsy Bogard as its first Global Research Development Director to partner with research groups internationally in the development of therapeutic approaches for the treatment of FOP. With nearly 20 years experience managing drug development activities, Bogard was previously the Director, Program Management for Genzyme, a Sanofi company, where she led early-stage orphan disease drug development activities. She also had experience developing and managing disease registries, including three years managing the International Collaborative Gaucher Group’s Gaucher Registry, one of the largest and oldest registries for a rare disease. Bogard has an M.S. in Health Policy and Management from the Harvard School of Public Health. July 2014 was a milestone in the history of IFOPA - the first clinical trial of an FOP drug. A Phase II clinical trial investigating palovarotene for the treatment of FOP began.〔http://www.clinicaltrials.gov/ For clinical trials on FOP, use search term "fibrodysplasia".〕 Palovarotene is a drug shown to prevent heterotopic bone formation in animal models of FOP.〔http://www.raredr.com/publications/Rare-Disease-Report/2015/october-2015/orphan-drug-designation-fop〕 In late November 2014, IFOPA hosted the first ever FOP Drug Development Forum in Boston Massachusetts. With 128 attendees, the event brought together researchers from universities and bio-pharmaceutical companies from around the world as well as several government experts, a few investment firms, and a small number of FOP patient and parent advocates to discuss the important questions and challenges of developing a safe and transformative therapy for FOP. The goals of the meeting were to address questions and knowledge gaps that existed in FOP drug development, stimulate new ideas to help advance development of potential therapies as quickly and efficiently as possible, and facilitate dialogue, foster collaboration, and form connections among interested researchers. 抄文引用元・出典: フリー百科事典『 ウィキペディア（Wikipedia）』 ■ウィキペディアで「International FOP Association」の詳細全文を読む スポンサード リンク
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