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.
A girl named Audrey Nethery of Louisville, Kentucky has a large online following from her singing and dancing videos and has brought public attention to the very rare disease.   "The tiny dancer’s zest for the feel-happy, cool move packed, music pumping workout ( Zumba ) has inspired millions of people to fall in love with her. Subsequently, all the unexpected attention on Audrey has given her family a great opportunity to raise much needed awareness and funds for Diamond Blackfan Anemia (DBA)."  [ citation needed ]
A medical approach that is not currently part of standard practice. Complementary medicine is used along with standard medicine. Alternative medicine is used in place of standard medicine. Example of CAM therapies are acupuncture, chiropractic, homeopathic, and herbal medicines. There is no complementary or alternative therapy that effectively treats bone marrow failure. Some CAM therapies may even hinder the effectiveness of standard medical care. <strong>Patients should talk with their doctor if they are currently using or considering using a complementary or alternative therapy.</strong>