NBIA Disorders Association awards first NBIA Center of Excellence in U.S.
September 2023
By James A. Bourgeois
The NBIA Disorders Association has awarded the Oregon Health & Science University in Portland its first Center of Excellence designation for exceptional work in NBIA care and research.
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| The NBIAcure team at Oregon Health & Science University are recognized for their exceptional work and receive the first Center of Excellence designation from NBIA Disorders Association at family conference in May. |
The designation, made possible by the efforts of the NBIAcure team led by Dr. Susan Hayflick at OHSU, was announced at our organization’s international family conference in May. It recognizes the high-level of expertise that OHSU and NBIAcure bring to NBIA research and clinical care. Hayflick, Dr. Penny Hogarth and other members of the team are international NBIA leaders and have distinguished themselves in the field for decades.
“It’s a real honor to be recognized in this way,” Hayflick said, coming to the conference podium to receive a plaque with the designation.
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| Dr. Susan Hayflick accepts Center of Excellence plaque from Dr. James Bourgeois, who serves on the board of trustees and is chair of the association’s Clinical and Research Development Committee. |
The award is the culmination of a nearly yearlong effort by our Clinical and Research Development Committee, created last summer, to designate NBIA Disorders Association Centers of Excellence (COE) and Clinical Care Centers (CCC) in the United States. These designations help NBIA families find excellent and experienced NBIA care closer to home, with COEs being our highest classification level because of their clinical research activities.
Members of the committee use their professional and institutional connections to encourage further development of clinical care and research into NBIA disorders. The committee also partners with medical centers that seek to attain this recognition. The committee envisions a network of COE and CCCs to serve NBIA patients and their families, as well as collaborate with our organization on clinical care and clinical research.
Along with me, members of the committee are Kathleen Ayers of Sacramento, California; Steve Pirnie of Providence, Rhode Island; Loreen Pirnie also, of Providence; Eric Pozsgai of Columbus, Ohio; Maryann Ruchirushkul of Houston, Texas; Reed Mollins of High Falls, New York; and Cheryl Lamos of Albany, New York.
We welcome additional committee members who are in the health professions, the research community, and/or health care administration. Anyone who is interested in learning more can contact me at jbourgeois@ucdavis.edu.
James Bourgeois of Sacramento, California, serves on the NBIA Disorders Association Board of Trustees and works at the University of California, Davis, as Clinical Professor of Psychiatry. He is chair of the association’s Clinical and Research Development Committee.
