Patient Advocacy Groups
The Rare Bronchiectatic Diseases Consortium (RBDC) studies four rare diseases: primary ciliary dyskinesia, alpha1 antitrypsin deficiency, humoral immunodeficiencies, and STAT3 hyper-IgE syndrome; which share bronchiectasis as a serious and progressive pulmonary complication marked by chronic infection and airway inflammation. Therapeutic development for bronchiectasis has historically lagged, in part due to limited understanding of disease trajectories and the biologic mechanisms that initiate and perpetuate airway injury. In partnership with patient advocacy groups and the Rare Diseases Clinical Research Network, the consortium aims to advance awareness of these underrecognized conditions, define their longitudinal clinical course, and generate high quality clinical and biomarker data essential for future clinical trials. Guided by new insights from our updated “Vicious Vortex 2.0” model of bronchiectasis pathogenesis, built off of the Vicious Vortex model proposed by Flume1, the consortium seeks to identify novel therapeutic targets and treatable traits. Through these efforts, we aim to accelerate drug discovery, strengthen the pipeline of rare disease investigators, and ultimately improve outcomes for individuals affected by these conditions.
Alpha-1 Foundation
Supports, educates, and empowers people affected by alpha‑1 while driving research, awareness, and progress toward a cure for alpha‑1 antitrypsin deficiency.
COPD Foundation
Advances, supports, and empowers people affected by COPD, bronchiectasis, and NTM lung disease while driving research, education, and advocacy to improve lung health and quality of life.
Immune Deficiency Foundation
Supports, educates, and empowers people affected by primary immunodeficiency while advancing diagnosis, treatment, and quality of life through advocacy, community, and research.
Job Research Foundation
Advances, accelerates, and supports research to improve treatments and drive progress toward a cure for Job syndrome (STAT3‑HIES).
Primary Ciliary Dyskinesia Foundation
Supports, educates, and empowers individuals and families affected by primary ciliary dyskinesia while driving research, awareness, and improved clinical care to advance better lives and better outcomes.