title: Rare disease partnership: the role of the US HAEA in angioedema care.
abstract: Rare diseases, including hereditary angioedema, present a unique set of challenges for clinicians and investigators. The most successful way to negotiate these difficulties has been to develop collaborative efforts among physicians and with patient advocacy organizations and pharmaceutical companies. The US Hereditary Angioedema Association is a large nonprofit patient advocacy organization that has been the catalyst for these types of collaborative arrangements involving hereditary angioedema. The dedication and unique structure of this patient advocacy organization has allowed it to make a substantial contribution to improving hereditary angioedema diagnosis and care.
authors.affiliation: Department of Medicine, University of California San Diego, 9500 Gilman Drive, La Jolla, CA 92014, USA; Department of Medicine, San Diego VA Healthcare, 3350 La Jolla Village Dr., San Diego, CA 92161, USA. Electronic address: bzuraw@ucsd.edu.
authors.forename: Bruce L
authors.initials: BL
authors.lastname: Zuraw
authors.forename: Sandra C
authors.initials: SC
authors.lastname: Christiansen
mesh_terms: D054179:Angioedemas, Hereditary / Q000175:diagnosis / Q000628:therapy; D004502:Education, Medical, Continuing; D049673:History, 20th Century; D006801:Humans; D005791:Patient Care; D010353:Patient Education as Topic; D011364:Professional Practice; D035583:Rare Diseases; D012106:Research; D014481:United States; D014837:Voluntary Health Agencies / Q000266:history / Q000458:organization & administration*
keywords: Biorepository; Hereditary angioedema; Patient advocacy; Rare disease; Registry