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. To register, click here.
The ACDA publishes newsletters, encourages fundraising activities, supports on-going medical research and maintains a list of medical journal articles related to ACD. It is our hope that these efforts will culminate in finding the cause and ultimately a cure for ACD.
NOTE: There is a critical need for patient tissue samples to improve the success of on-going ACD research. For more information, please click here
As the ACDA has grown, it has become evident that the assistance and energy of additional members is necessary for managing the activities of the Association. ACD awareness is growing in part due to the efforts of many of our members and we want to ensure that their efforts continue to be successful. Therefore, we are pleased to announce that we are adding three committees to the organization. Because of their on-going and unwavering commitment to the ACDA, we have asked three families to each chair a committee. We are grateful that they agreed to volunteer their time, ideas and energy, and we know they will provide the ACDA membership with additional resources and energy. The Chairpersons are:
- Family Support Chairperson – Kim Anderson Bush (mom to Ronan and Phoebe)
- Fundraising Chairpersons - Emily and Tim Eschweiler (Parents of Joey)
- Research Chairperson – Diana Locke (mom to Christopher)
The ACD Assocition has partnered with the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases. There will be activities across the U.S., throughout Europe, in Canada, in Australia, in China and elsewhere to focus attention on rare diseases as a public health issue.
ACDA Awareness ribbons are available as a car magnet or refrigerator magnet and look for more products coming soon. Order some today and get the word out about our cause. Order Ribbons
Click below for an ACD Public Service Announcement.
ACD Public Service Announcement (English)
ACD Public Service Announcement (Spanish)