TIRCON Partners NBIA Disorders Association
Partner Profile
NBIA Disorders Association is a non-profit lay advocacy organization dedicated to providing emotional support to families affected by Neurodegeneration with Brain Iron Accumulation (NBIA), educating the public about these disorders and supporting research to find a cure. It was founded in 1996 and currently has 271 NBIA families registered with the organization. Of these, 204 families are from the United States, with the remaining 67 families from 15 European countries and 10 others from around the world. NBIADA’s board of trustees has 8 members who are volunteers and the organization has no two part-time employees. The organization has awarded 21 NBIA research grants totalling $650,800 (USD) in the past twelve years, and another $200,000 in research projects currently underway. Donations are mainly from individuals and NBIA family fundraisers and a private foundation donated $250,000 for NBIA research in 2010. We publish a newsletter that goes out to over 3,200 households three times per year and have a website at www.NBIAdisorders.org that has a great wealth of information for NBIA families, caregivers and physicians. We hold a family conference every two years and just had our seventh in April, 2013. We have helped organize two Scientific Workshops/Symposiums at the National Institutes of Health in Bethesda, Maryland, USA, to promote NBIA research. They were held in 2000, 2005 and 2010 and brought together 25-40 researchers from around the world each time to learn and collaborate with each other. We have a listserv for NBIA families, caregivers, doctors and others where support is available, questions regarding medications, treatments and therapies can be discussed and the latest NBIA news can be shared quickly. We work closely with HoBa in Germany and AISNAF in Italy and encourage the formation of new groups in other countries as part of the newly formed NBIA Alliance in January, 2012.
Expertise
Patricia Wood is the president and founder of NBIA Disorders Association. She has a 27 year-old daughter with idiopathic NBIA and sought information and answers when her daughter was diagnosed in 1989, finding neither. Her desire to unite NBIA families and promote NBIA research led her to finding Dr. Susan Hayflick at Oregon Health & Science University in Portland, Oregon, USA in 1996. She collaborated with Dr. Hayflick in starting the then named Hallervorden-Spatz Syndrome Association and they have continued their partnership with Dr. Hayflick the Director of NBIADA’s Scientific & Medical Advisory Board. As president, she is responsible for the day-to-day- running of the organization, organizes the family conferences, produces the newsletter, coordinates the research grant program and handles all dissemination and research related activities of NBIADA.
Main tasks in the consortium
- Non-beneficiary partner in WP1, WP 4, WP6
- Partner in WP7
