This registration form is for the DBA Foundation. Registering with the DBA Foundation will provide you with the newsletter and give us a way we can contact you about DBA updates. The form can also be used to make changes on your current information. If you have moved and are not sure if we have your information, please fill out the form below. To be clear, it is important for all our families to understand the difference and purpose of the Diamond Blackfan Anemia Foundation (DBAF) and the Diamond Blackfan Anemia Registry (DBAR).
The DBAF is the family support group that funds research projects with the money raised by our families and friends, organizes Camp Sunshine, and publishes the newsletter. Families can be placed on our mailing list by filling out the form below or calling Dawn Baumgardner at 1-716-674-2818 (Eastern Time).
The DBAR was established by Dr. Jeffrey Lipton and Dr. Adrianna Vlachos to collect accurate and complete data on DBA patients. Because there are so few of us, it is imperative that all North American patients register with the DBAR. The more information the DBAR has to analyze, the more answers we will have to our questions. For more information visit www.dbar.org or call the DBAR at 1-888-884-DBAR (Eastern Time).
It is important to know that because of privacy laws, the DBAF and DBAR can not share information. You must register with both. Also, please remember to notify the DBAF and DBAR with any personal information changes. Any changes in medical status should be reported to the DBAR.
Thank you for your registration. To sign up for the DBAR, please go to www.dbar.org.