Diamond Blackfan Anemia Foundation
Diamond Blackfan Anemia Foundation | Be part of our community as we work to find a cure.
161459422
1994
Buffalo, NY 14224 United States
dbafoundation.org
DBAFoundation
dbafoundation
Diamond Blackfan Anemia Foundation
The Diamond Blackfan Anemia Foundation is a US nonprofit organization dedicated to supporting and advancing research on Diamond Blackfan Anemia (DBA), a rare genetic disorder affecting red blood cell production. Founded in 1994, the foundation's mission is multifaceted, focusing on support, education, advocacy, and research to ultimately find a cure for DBA.
Mission and Objectives
The foundation's objectives include:
- Support and Education: Providing assistance and educational resources to DBA patients and their families, as well as healthcare professionals.
- Advocacy: Serving as a voice for the DBA community, promoting awareness among the medical, scientific, and broader public.
- Research Advancement: Funding medical research projects aimed at improving the understanding and management of DBA, with a goal to find a cure.
The organization achieves these goals through various activities:
- Meetings and Events: Hosting gatherings that bring together DBA patients, families, and renowned medical experts.
- Information Dissemination: Publishing newsletters and other materials containing information on DBA research, clinical trials, and patient stories.
- Community Building: Facilitating connections among DBA families across the United States and internationally.
Research and Impact
DBA is identified as a ribosomopathy, characterized by faulty ribosome biogenesis affecting erythropoiesis, leading to red blood cell failure. The foundation supports research that explores these underlying mechanisms, as well as potential complications such as cancer susceptibility, which is a concern in inherited bone marrow failure syndromes like DBA.
The foundation's efforts have contributed to improved clinical care and awareness of DBA. By fostering a collaborative environment between families, researchers, and healthcare providers, the foundation plays a critical role in advancing DBA research and enhancing the quality of life for individuals affected by the disorder.
[1] https://www.dbar.org/resources [2] https://dbafoundation.org [3] https://pmc.ncbi.nlm.nih.gov/articles/PMC2886591/ [4] https://research.childrenshospital.org/research-units/childrens-rare-disease-collaborative/crdc-rare-diseases/diamond-blackfan-anemia [5] https://dbafoundation.org/families-and-individuals/family-websites/
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Spolek VLČÍ MÁKY10656 |
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MDA RIDE z. s.Praha |
Novinky
As a patient, parent, loved one, doctor, or researcher, we all have reasons to "fight" Diamond Blackfan Anemia Syndrome. Please read and consider showing your support for this amazing DBAS Dad as he literally, FIGHTS for DBAS. Thank you, Kayum! (Please be careful!) (fb)
Exciting breakthroughs are possible because of brilliant brains like these at Stanford and the funding you provided to help the DBAF fund Agnieszka Czechowicz's, MD, PhD project to test this approach in DBAS patients. Thank you researchers, Friends of DBAF, Diamond Blackfan Anemia Canada and our awesome donors! (fb)
Poslední komentáře
So grateful for the work the Diamond Blackfan Anemia Foundation is doing to support our loved ones and advance research! Together, we can make a difference! 💙 #DBAFamilydetail |
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Thank you, DBAF, for your tireless efforts in educating and advocating for our community! Your commitment gives hope to so many families affected by Diamond Blackfan Anemia. 🙌 #CureDBAdetail |
Poslední diskuze
1. What strategies can the DBA Foundation implement to better support families affected by Diamond Blackfan Anemia in their everyday lives?Odpovědí: 3, Naposledy před 1 den detail |
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2. How can advancements in clinical trials for DBA lead to more effective treatments or potential cures, and what role can our community play in promoting awareness and participation?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
1
20
4.5
Buffalo
O společnosti
- G12 -
Our Mission To support and educate. To advocate for our community. To advance research and find a cure forDiamond Blackfan Anemia Syndrome. It is because of these faces and hundreds more unseen in collaboration with the dedication hard work and the love of all our DBA families that we continue to exist.
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