Register

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 The information that you provide will not be published on this website and will not be made available to any other party without seeking your written permission first.

Your Name(s)(required)

Name of your child diagnosed with ACDMPV(required)

Email(required)

Address

City

State

Country

ZIP code

Telephone Number

How many children do you have, including the child diagnosed with ACDMPV?(required)

Date of birth (and date of death, if applicable) of your child diagnosed with ACDMPV. Please enter all dates in the format Day/Month/Year. (required)

Name and date of birth of all your other children, if applicable. Please enter all dates in the format Day/Month/Year. (required)

Ethnicity

The treatment your child received. Please list names of doctors & institutions as well as specific treatments such as ECMO, nitric oxide, etc.

Was your child diagnosed with any other abnormalities?

May we share this information with other registered ACDA families?

Yes No

May we share this information with Physicians/Researchers?

Yes No

Additional info, if any

Have you joined the private 'ACD Parent Group' on Facebook?

Yes No

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.

ACD Association

Register

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