Our aim is to provide a voice for children with DBA in Africa.
The DBA Africa Registry is currently being encrypted so as to allow international merging of DBA databases. The importance of a DBA Africa database cannot be over emphasized. We need to identify everyone with DBA in Africa so that we can give our children a voice and add to the growing body of research in this field.
A database allows us to:
- Provide support to families with DBA
- Identify and advocate for children with DBA who are not able to access standard care
- Provide information to attending doctors and families on the treatment and advances in DBA
- Get a better understanding of the impact of DBA in our demographic population
- Advance research
- Apply for funding for future research, treatment and facilities for DBA patients
- Ultimately find a cure for our children
If you are interested in registering your child or want further information about identifying whether you or your child has DBA, please contact us and request our questionnaire. We will assist in any way we can. All information is confidential.
If you are not sure whether your child has DBA but has any of the following, contact us and we will try to assist:
- Needs blood transfusions regularly
- Had an episode of anemia before the age of 1 year old
- Has a family member who is transfusion dependent
- Has a persistently raised MCV
Click here to send us your details and we will contact you as soon as the database is encrypted.