Alveolar Capillary Dysplasia Association (ACDA)
Searching for Answers, Hoping for a Cure
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 worldwide 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 throughout the United States of America as well as the United Kingdom, Europe, New Zealand and Australia.
ACD - What is it?
The Alveolar Capillary Dysplasia Association (ACDA) is a group of parents throughout the world who has experienced a common tragedy - the death of a baby due to Alveolar Capillary Dysplasia (ACD). The purpose of the ACDA is to gather and share information, provide a supportive environment to families and encourage research related to ACD. This site is the foundation of a support system and database for both families and physicians throughout the world. There is no religious affiliation and there are no membership dues or fees.
This is an area where new families can register themselves with ACDA, and read contributions from other families (it can help to know that you are not alone).
It is possible to make a tax-deductible contribution for ACD research to the National Organization for Rare Disorders (NORD) in Danbury, Connecticut in the United States
There are many other organizations that can offer families help and support through the difficult times.