Alveolar Capillary Dysplasia Association
c/o Steve Hanson,
About Alveolar Capillary Dysplasia Association
The Alveolar Capillary Dysplasia Association (ACDA) is a non-profit organization dedicated to providing information, support, and resources to parents of children born with alveolar capillary dysplasia (ACD). ACD is a condition characterized by abnormal development (dysplasia) of the tiny air sacs in the lungs (alveoli). In all reported cases, ACD has occurred in association with primary pulmonary hypertension of the newborn (PPHN), which is characterized by abnormally increased blood pressure in the arteries supplying the lungs. Affected infants also typically have misalignment of pulmonary veins, poor development of certain capillaries, and/or other findings. In most cases, during the first days of life, affected newborns develop a bluish discoloration of the skin and mucous membranes (cyanosis) due to abnormally low levels of circulating oxygen (hypoxia), and experience difficulty breathing. In many cases, life-threatening complications may result within three to four weeks. The condition usually appears to occur randomly, for no apparent reason (sporadic). However, a few familial cases have been reported. The Alveolar Capillary Dysplasia Association was established in 1997 by the parents of a child born with ACD. The association is committed to providing mutual support to affected families through networking services; offering information concerning current research; educating the medical community and the general public about alveolar capillary dysplasia; and working with affected families and the medical community to expand the current knowledge of ACD.