Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. Knowing where to seek “expert” medical advice and participating in the DBA registries, clinical trials, family meetings, and email support groups benefits all DBA patients. For most, knowing you are not alone and that there are others that feel and “know” what you are experiencing is an integral part of the coping process. We strongly encourage you, our DBA family, to reach out to us and get involved. Our hope is that this site provides some avenues for you and your family to assist you on this journey.
We invite you to share your personal experiences with our DBA family. To add a patient’s photo, your family’s link, news story links, and DBA fundraising announcements to our site, please email the information to DBAFoundation@juno.com
DBA Family Websites
Do you twitter? If so, follow us and keep up to date on Diamond Blackfan Anemia tweets at http://twitter.com/DBAFoundation