If your family has been affected by ACDMPV, please register with the ACDA by filling in the form below. In the years since the ACDA has been established, we have talked with physicians, researchers and families about how we might make a difference. We believe we have begun this task, but there is still much we can do. We have learned one very important thing – as our numbers grow, our voice in the medical community gets louder. It is this voice that will lead to the answers we all long for. Please register for free and join the growing number of families who search for answers. The information that you provide will not be published on this website and will not be made available to any other party without seeking your written permission first.
The ACDA offers the following:
- ACDA website
- Compassionate support for diagnosed or bereaved families
- Quarterly newsletter
- Directory of registered families
- Referrals to private Facebook support groups
- Fundraising support
- Comprehensive library of medical articles
- Guidance through the genetic testing process
- Contact with physicians, researchers and pathologists
- Referrals to medical professionals familiar with lung transplantation options for ACDMPV patients
The ACDA does not offer medical advice but does try to provide access to as much information as each family requires.