Resources- Specific Diagnosis Card Catalog- Alveolar Capillary Dysplasia (ACD)

Who to Contact

Alveolar Capillary Dysplasia Association
c/o Steve and Donna Hanson
5902 Marcie Court
Garland TX 75044-4958
Web: www.acd-association.com

The Alveolar Capillary Dysplasia Association (ACDA) is a group of parents throughout the world who have experienced a common tragedy - the death of a baby due to Alveolar Capillary Dysplasia (ACD).

This site is the beginning of what we hope will become a world wide support system and database for both families and physicians to share information about ACD. Research is just beginning, we are very excited about the studies which are planned. By communicating with others we hope to be able to expand our understanding of ACD even more.

In addition to our search for information, we continue to hope for contact with other families. We have found we can be of great support to each other. The current member families are spread through out the United States of America as well as the United Kingdom, Europe, New Zealand and Australia.

Extracorporeal Life Support Organization (ELSO)
1327 Jones Drive Suite 101
Ann Arbor, MI 48105
734-998-6601 (Registry)
Email: Registry: prycus@umich.edu or Office: phankins@umich.edu
Web:www.elso.med.umich.edu

This an international consortium of health care professionals and scientists who are dedicated to the development and evaluation of novel therapies for support of failing organ systems. Crucial is the promotion of a broad multidisciplinary collaboration. The primary mission of the Organization is to maintain a registry of, at least, use of extracorporeal membrane oxygenation in active ELSO centers. As appropriate, registries of other novel forms of organ system support are within the purview of ELSO. Registry data is to be used to support clinical research, support regulatory agencies, and support individual ELSO centers. ELSO provides educational programs for active centers as well as for the broader medical and lay communities.

Where to go to Chat with Others?

ECMO Kids
This list is for parents, friends and families of children who are or have been on ECMO (extracorporeal membrane oxygenation). Topics available for discussion could be long term effects, mutual support and patient updates among other things.

Learn More About It

Alveolar Capillary Dysplasia (Hypoplasia) With Misaligned Veins
From Dr. Martha L. Warnock

ACD - What is it?

Alveolar Capillary Dysplasia

Links

Alveolar Capillary Dysplasia Homepage

Extracorporeal Life Support Organization (ELSO)

Mommies Enduring Neonatal Death (M.E.N.D.)