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Diamond Blackfan Anemia Foundation, Inc.

Last Update:7/21/2018
Contact:
Title:
Address:P.O. Box 1092
West Seneca, NY 14224
County:Nationwide
Phone:716-674-2818
Toll Free:
Fax:
TDY:
E-Mail:
Website:www.dbafoundation.org
Mission

The mission of the Diamond Blackfan Anemia Foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome.

We are dedicated to patient advocacy and providing support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.

Program Description

The focus of the foundation is raising money for research with a lot of information on current research, tips for fundraising, and ways to donate online.

However, there are many helpful resources on their website with downloadable educational handouts (including how to assemble a personal health notebook to organize health information for doctor's visits) and links to other helpful websites (such as the National Cancer Institute and web based support groups). There are also links to access personal family websites who have children with Diamond Blackfan anemia.

The website has a listing of open clinical trials involving patients with DBA and information about how to enroll.

There is an e-mail support group that you can join for emotional support and to talk with other families about life with DBA.

The DBA foundation sponsors a family camp yearly called Camp Sunshine where parents attend informational lecture and the kids participate in camp activities.

Follow on Twitter:Diamond Blackfan (@DBAFoundation)
Find on Facebook: Diamond Blackfan Anemia Foundation

Financial
Services
Blood disorders
Bone Marrow Diseases/Transplant
Camp
On-line Community/Listserv/Social Media
Parent Education/Training
Research
Counties Serviced
Nationwide
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