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Tag Archives: DBA

Clinical Trial Opportunity

We are pleased to share and update information regarding the clinical trial entitled, “Phase I/II, Open-Label Study to Determine Safety of Trifluoperazine (TFP) in Adults with Red Blood Cell Transfusion-Dependent Diamond Blackfan Anemia.” The Feinstein Institutes for Medical Research and Cohen Children’s Medical Center in NYC Announce the Addition of Boston Children’s Hospital as a Study Center for the Clinical  Continue Reading »

New Information & Recommendation Regarding Increased Cancer Risks

In June 2021, a “Special Report” entitled, Colorectal cancer screening and surveillance strategy for patients with Diamond Blackfan anemia: Preliminary recommendations from the Diamond Blackfan Anemia Registry was published in Pediatric Blood & Cancer. At this time, the abstract is available for free and full access to the article is available only through paid subscriptions or institutional access. In addition  Continue Reading »

Response to People Magazine’s Article

As the Executive Director of the Diamond Blackfan Anemia Foundation (DBAF), it is both my professional responsibility and personal passion to fulfill the DBAF’s Mission Statement: 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  Continue Reading »

Camp Sunshine Applications Are Available Now!

The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce our 11th national family retreat. This retreat will take place during the week of  July 9 – 14, 2017 at Camp Sunshine, which is located at Lake Sebago, Maine. Air carriers fly into Portland, Maine.  Ground transportation is provided by Camp Sunshine to the campus. Camp Sunshine has proven to be an unforgettable experience  Continue Reading »

DBAF Hosts 14th DBA International Consensus Conference in Atlanta, GA

The 14th Diamond Blackfan Anemia International Consensus Conference was a huge success. It is a privilege to continue the meeting founded and previously sponsored by Marie Arturi and the Daniella Maria Arturi Foundation. The DBA Foundation is grateful for the support of DBA Canada, the Daniella Maria Arturi Foundation, DBA-UK, Captain Courageous (Australia) and the Resource Capital Funds Foundation. The cooperation  Continue Reading »

“Life with DBA” by Laurie Shore, DBA speaker at the 14th DBA International Consensus Conference

When I was diagnosed with Diamond Blackfan Anemia back in 1970, I was lucky enough to have a doctor that knew about DBA and knew what he was dealing with. I was put on a course of treatment and throughout the years, the doctors did what they could. But having DBA was a very isolating experience for my mom and my dad  Continue Reading »

Welcome and thank you. Christopher Vroman’s Story shared at the 14th DBA International Consensus Conference

It means more than you could ever imagine to myself, my brother and to the rest of my family that you have come here to collaborate with great minds in order to work towards a cure for DBA. As some of you may already know, I was diagnosed with DBA when I was seven weeks old, and I have never  Continue Reading »

DBAF provides Sponsorship for Conference on Ribosome Synthesis

By: Steven R. Ellis, Ph.D. Dateline: August 21st 2015, Brussels Belgium Ding…………….that’s odd, it is 3:00AM back in the US: who would be e-mailing me now? Ah, it’s Jeff Lipton; who happens to be sitting immediately in front of me listening to a talk at the 10th triennial Conference on Ribosome Synthesis. The e-mail is sent to all members of  Continue Reading »

A Clinician/Researcher’s Perspective… Camp Sunshine 2015

By Vijay G. Sankaran, M.D., Ph.D. As both a pediatric hematologist caring for patients with blood disorders and a scientist working to improve our understanding of the genetic basis of these diseases, I spend a large fraction of my time thinking about Diamond Blackfan anemia (DBA). However, while I have always found DBA to be a fascinating disease to study  Continue Reading »

A Parent’s Perspective… Camp Sunshine 2015

By Casey Sears Wilson It is difficult to summarize an experience that we had no idea would be so impactful. However, I want to take the time to do so in a way that will permit anyone willing to take the time to read this to step into our grateful shoes and also to recognize the many gifted people that  Continue Reading »