Skip to Content

for patients…for families…for research

Spotlight Stories

Posted on: September 20, 2021

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 » Posted in: Clinical Trials, News, Spotlight Stories
Posted on: July 9, 2021

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 » Posted in: News, Spotlight Stories
Posted on: April 9, 2021

COVID-19 & Vaccine Updates from the DBAR

Many thanks to the DBAR team for taking the time to answer our patients’ and families’ questions regarding COVID-19 and the vaccines. We appreciate Dr. Adrianna Vlachos and Dr. Michelle Nash’s efforts to keep us updated and informed. Please note, this is an evolving  situation and new information and developments are continuously unfolding. As always, please consult with your personal  Continue Reading » Posted in: News, Spotlight Stories
Posted on: April 14, 2020

Dr. Adrianna Vlachos Answers Your COVID-19 Questions

On Saturday, April 11, the Diamond Blackfan Anemia Foundation (DBAF) welcomed Dr. Adrianna Vlachos, Director of the North American DBA Registry (DBAR), to address COVID-19 concerns of the DBA Community. If you were not able to join, or would like to review the information, the video is available below and also on Facebook and YouTube. Facebook: https://www.facebook.com/dbafoundation/ YouTube: https://www.youtube.com/watch?v=-Syyf43JIKM We  Continue Reading » Posted in: News, Spotlight Stories
Posted on: January 14, 2019

Camp Sunshine Applications are Available Now!

The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce our 12th national family retreat. This retreat will take place during the week of  July 7 – 12, 2019 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 » Posted in: Camp Sunshine, Misc, News, Spotlight Stories
Posted on: April 9, 2018

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 » Posted in: News, Spotlight Stories
Posted on: August 14, 2017

Camp Sunshine 2017 Recap

Oh… Camp Sunshine… we are so very grateful! Through the generosity and compassion of our friends at Camp Sunshine, DBA families and patients from around the world met in Casco, Maine from July 9-14, 2017. Our eleventh family meeting was a huge success! As presentations are received and approved by the presenters, they will be posted to our website here:  https://dbafoundation.org/families/camp-sunshine/ Posted in: Spotlight Stories
Posted on: January 9, 2017

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 » Posted in: News, Spotlight Stories
Posted on: August 26, 2016

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 » Posted in: News, Research, Spotlight Stories
Posted on: September 14, 2015

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 » Posted in: News, Research, Spotlight Stories