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Diamond Blackfan Anemia

What is Diamond Blackfan Anemia?

Diamond Blackfan Anemia is a rare blood condition where bone marrow produces little or no red blood cells.

 

Diamond Blackfan Anemia is a rare blood condition where bone marrow produces little or no red blood cells.
Acknowledgement of Diamond Blackfan Anemia has not been added yet.
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Synonyms for Diamond Blackfan Anemia has not been added yet.
Cause of Diamond Blackfan Anemia has not been added yet.
Symptoms for Diamond Blackfan Anemia has not been added yet.
Diagnosis of Diamond Blackfan Anemia has not been added yet.
Diagnostic tests of Diamond Blackfan Anemia has not been added yet
Treatments of Diamond Blackfan Anemia has not been added yet.
Prognosis of Diamond Blackfan Anemia has not been added yet.
Tips or Suggestions of Diamond Blackfan Anemia has not been added yet.
References of Diamond Blackfan Anemia has not been added yet.
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Community External News Link
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SoCal toddler with rare genetic disorder inspires resiliency, research and hope 06/11/2023
Community Resources
Title Description Date Link
Diamond Blackfan Anemia Foundation

The mission of the Diamond Blackfan Anemia Foundation (DBAF) is "to collectively and actively generate funds for the charitable and scientific purpose of furthering, by clinical study, laboratory research, publication and teaching, the knowledge of the disorder known as Diamond Blackfan Anemia (DBA).

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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My name is Kevin. I was diagnosed with DBA as an infant. In January of last year (2013) my body stopped responding to the steroid regimen and I became transfusion dependent. I am now in the...
I am the mom of a little girl who was recently diagnosed with Diamond Blackfan Anemia. Right now, she is 8 months old. Her name is Bailey.

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