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Diamond Blackfan Anemia Foundation

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Nonprofit Overview

Causes: Health

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 providing patient advocacy, 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.

Target demographics: Diamond Blackfan Anemia patients and families

Direct beneficiaries per year: support Diamond Blackfan Anemia patients, families and research.

Geographic areas served: worldwide

Programs: information, educational materials, support and advocacy. We sponsor international scientific conferences and family support meetings, as well as research grants for approved research projects. Our Facebook page is https://www.facebook.com/dbafoundation

Community Stories

49 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

Parents supporting parents, researchers supporting researchers and parents, and doctors caring for our children and families. Diamond Blackfan Anemia Foundation is a community who works together to make a difference in the the lives of individuals with this rare bone marrow failure disorder. I can say as a parent I don’t know where my family would be today without this foundation’s guidance and support!

Client Served

Rating: 5

Im an adult DBA patient and have been living with this rear disorder for 38 years. At the time I was diagnosed my parents had no where to turn for help or support, and being the rear nature of this disorder even the doctors had very little to offer, I can't imagine receiving the news of having a sick child and have no where to turn. Now thanks to the tireless efforts of the DBA Foundation newly diagnosed patients, older patients, and there family's have place to turn for help, information on treatments, and most of all support. The DBA Foundation, although coordinating with specialist in the feld of hematology and researchers to help find a cure provides one other important key in our lives and our childrens lives. That is a sense of community or as we call it our DBA Family.

General Member of the Public

Rating: 5

The Diamond Blackfan Anemia Foundation is a life saver for families affected by this rare bone marrow failure. It was founded by parents who work tirelessly to raise awareness and to secure funds for further research. Lives are being saved because of the dedication of this group of people who will stop at nothing until a cure is found.

Previous Stories

Donor

Rating: 5

The Diamond Blackfan Anemia Foundation provides much needed support to families who have had this rare disorder touch their lives. Donating to this worthwhile cause helps to provide much needed funds to to ensure that research continues so that a cure can be found. It warms my heart to know that donations go directly to help this non profit reach their goals.

Caroline Butler K.

Client Served

Rating: 5

I dont know where to start in telling what this foundation means to me and my family. Since my son was diagnosed at 2 months old (now 6 yrs old) The founder Dawn and so many other families that are a part of this foundation have been MY foundation and my calm in the storm that caring for a sick child can bring. The love and support I found here have been amazing and friendships that will last a lifetime. If it wasnt for Dawn and the foundation I would have never known about the amazing doctors in New York to help guide our treatments and The National Institute of Health where we are going for transplant. Pretty much our whole treatment and path has been led by this foundation. I am forever grateful!!!

Katie113

Client Served

Rating: 5

I truly can't imagine a better charity. The wealth of information we've received from the DBAF has been life-saving. We have three daughters with DBA and would have been so lost without their help and constant support. We are so grateful for all they have done for our family and the DBA community.

Previous Stories

Client Served

Rating: 5

I don't know where we would be without the Diamond BlackFan Anemia Foundation. The DBAF has connected us with the experts in DBA and provided us vital information on the disorder. The DBAF has provided our local hematologist with the latest treatment options and guided us through procedures, surgeries, and long-term treatment. Both of our daughters quality of life has been greatly improved because of the DBAF. Ms. Baumgardner is absolutely amazing and goes above and beyond to help families with DBA. She is truly saving lives. We are so grateful for the DBAF!

2 Vickie10

Client Served

Rating: 5

The DBA Foundation has been instrumental in ensuring we are providing the best care possible for our daughter. Without them, we would have continued on a treatment path that surely would have caused more damage than good years down the road. The support they provide for the families afflicted with this disease is incredible. Due to the rare nature of this disease, it is easy to feel like your family is alone in this fight, but with the DBA Foundation we soon found out we are NOT!

1 Anthony51

Board Member

Rating: 5

With less than 700 people in the U.S. affected by this challenging disease, there is little government support for the research needed to find a cure for Diamond Blackfan Anemia. The DBA Foundation - founded by DBA parents and supported by the generosity of DBA families - has done an extraordinary job in raising money to sponsor research and provide valuable information on patient care to families and doctors. Numerous lives have been saved through the DBA Foundation educational programs and today we find ourselves ever closer to a cure because of the research supported by the foundation. As a father of a child with DBA, it is an honor and privilege to serve on the Board of Directors.

1 Madeleine L.

Client Served

Rating: 5

Where to start the story of our son Mark, great doctors and the absolutely wonderful DBAF, is my dilemma. Mark was born on October 18, 1970 and it was one of the most special days in my life. We did not know how important our life's journey with Mark would be. His first Christmas was spent in the hospital for a blood transfusion. After that did not work for long Mark spent 27 days in Boston Children's Hospital which ended in his diagnosis of DBA. After many years of traveling to Boston and New York, many of them for research purposes, He decided to try a new procedure called, for the lack of a better title, a mini bone marrow transplant. He was the first DBA patient to try this and it worked. Even tough he was no longer anemic he always would be a DBA patient. This in turn led to a adorable young girl, who could not have a full bmt, to be cured of her anemia and save her life. Mark was so happy when he got to meet this beautiful child at Point Sebago, Maine at Camp Sunshine put together by the DBAF. From all the support our DBA families get from this wonderful caring foundation has come a close family fighting the fight as one. As a mother of a generation of children who did not know much of this awful blood condition, the knowledge that is now given to the families is priceless. The ability and caring of all the people who give from their hearts, whether is of their time or financial help, our DBA families thank you. I truly believe Mark was on this earth for a mission, to help our DBA families. Though he is no longer with us, the DBAF is and they are continuing the fight that Mark believed in. Please help Mark and the other DBA children by helping the DBAF, a truly caring and wonderful foundation.

Madeleine Lapierre, mother of Mark Lapierre , 10/18/1970-03/14/2013

General Member of the Public

Rating: 5

I first learned of the Diamond Blackfan Anemia Foundation through a friend of mine who is impacted by DBA. I have followed the Foundation on Facebook and online ever since, and I am in constant awe of all of the hard work, dedication, and unceasing compassion this foundation has to help those who have been diagnosed and their families. The Foundation helps and connects people all over the world who are impacted by DBA, and is a source of information and support. It's not just a foundation...it's a family.

Eileen R.

Client Served

Rating: 5

This charity saves lives. It brings together people who have had devastating news about their children. It wraps around them providing support and information. It supports a worldwide network of parents, doctors and outstanding researchers who support and provide hope. Not a penny is wasted.

Board Member

Rating: 5

My son is 4 and he has DBA.We from Ukraine and very little information here about our disease so the DIAMOND BLACKFAN ANEMIA FOUNDATION is the only way for us to learn any information or news about DBA.This organization gives us hope and believe))))Thank you!!!!

Ashley118

Client Served

Rating: 5

At 5 months old my son Hunter who is 6 now was diagnosed with DBA so as you can imagine I was full of questions and wonder and wanted to educate myself in every way. Here is where I came to gain the knowledge I have now to aid in decision making for transplant. When people find out what he has I direct them here so they may explore and learn. Also to try and raise awareness. They go above and beyond to do what they can to come together to help our children and adults who suffer from this horrible disease in finding a cure!

Client Served

Rating: 5

I have a daughter and two grandsons with DBA and I have learned so much from this foundation in the last few years something I didn't have when my daughter was growing up. They put so much effort in getting some research done to find a cure. Thank you for every thing you guys do.
Aline Bernard.

Donor

Rating: 5

This organization has done so much for my family and so many others that its benefit to this rare disease cannot be overstated. It is the major reason that any research is being done at all. It is the reason that so many of our kids are still alive. We are forever grateful that this Foundation exists.

Client Served

Rating: 5

DBA Foundation is an incredible organization. They have been so helpful to my family and me over the years as I've continued to live with DBA. I'm so grateful for their dedication to research and also providing us with information and support.

Tricia26

Client Served

Rating: 5

Our little 8 year old spunky monkey has Diamond Blackfan Anemia. The DBA foundation provides support, guidance, information...and often a shoulder to cry on. Having a child with a rare disease can be a scary lonely journey. Together we are DBA Strong!

Jodi26

Client Served

Rating: 5

I am 42 years old. Growing up my doctors suspected I had DBA, but I wasn't officially diagnosed until I became weekly blood transfusion dependent, almost four years ago. I felt so alone with this disease and then I found the DBA Foundation website. I soon learned that I was not in this fight alone! The foundation has given me so many things, information, contacts, support, and most of all the people I have talked to who have (and still do) supported me with their prayers, thoughts, encouragement. I know after talking for hours to Dawn that we are all one big DBA family. She gave me badly needed information so I could make a major life decision and I will always be grateful.

I have been through 2 bone marrow stem cell transplants and the DBA Foundation gave me the support I so desperately needed! I will never be able to express my appreciation.

Jodi

Client Served

Rating: 5

Incredibly friendly, hard-working and compassionate organization. I felt welcome the moment I connected with the head of the organization and know that I will continue to.

Jenn17

Client Served

Rating: 5

If it weren't for the Diamond Blackfan Anemia Foundation I would never have met the amazing people I have. They have truly brought together families with DBA from across the globe. I know that I would not be as able to withstand the challenges we face with our daughters health without the support from our DBA family. Not only that, they continue to find so much research for a cure. They have change our DBA world in more ways than I could ever explain. I am forever grateful for this organization. Without them, my family would be alone.

Amy_204

Client Served

Rating: 5

The Diamond Blackfan Foundation has been instrumental in giving my family support and resources for our daughters illness. We feel blessed to be able to count on them to help us!