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TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
DIAMOND BLACKFAN ANEMIA (DBA) WHAT IS DIAMOND BLACKFAN … Diamond Blackfan Anemia (DBA) Answers to commonly asked questions What is Diamond Blackfan Anemia? Diamond Blackfan Anemia (DBA) is a rareblood disorder.
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. DIAMOND BLACKFAN ANEMIA, GENETICS, AND YOU Diamond Blackfan Anemia, Genetics, and You Q Is Diamond Blackfan Anemia (DBA) a genetic disorder? A es, DBA is a genetic disorder. In about half of families Y | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.FAMILIESRESEARCHFUNDRAISINGNEWS & EVENTSRESOURCESABOUT US Latest News & Events April 9, 2021 COVID-19 & Vaccine Updates from the DBAR Many thanks to the DBAR team for taking the time to answer Continue Reading » Posted in: News, Spotlight Stories April 14, 2020 Dr. Adrianna Vlachos Answers Your COVID-19 Questions FAMILIES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. For Families. Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. DONATE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Please Donate. Thank you for your interest in Diamond Blackfan Anemia and for your willingness to help our very special patients. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is a 501(c)(3) tax-exempt organization and your donation is tax-deductible to the fullest extent allowed by law. RESEARCH | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Research. Because of our families’ continuous support, the DBAF has been able to fund many important research projects. These awards have been International, supporting research in England, France, Sweden, and Italy in addition to awards made here in the US. DIAGNOSIS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diagnosis. There are over 800 patients with DBA registered with the DBA Registry (“DBAR”). Each year, approximately 25 to 35 new cases of DBA will be diagnosed in the United States and Canada. DBA is an equal opportunity syndrome, affecting males and females and all ethnicities equally. Most patients are diagnosed with DBA within thefirst
TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
DIAMOND BLACKFAN ANEMIA (DBA) WHAT IS DIAMOND BLACKFAN … Diamond Blackfan Anemia (DBA) Answers to commonly asked questions What is Diamond Blackfan Anemia? Diamond Blackfan Anemia (DBA) is a rareblood disorder.
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. DIAMOND BLACKFAN ANEMIA, GENETICS, AND YOU Diamond Blackfan Anemia, Genetics, and You Q Is Diamond Blackfan Anemia (DBA) a genetic disorder? A es, DBA is a genetic disorder. In about half of families Y LEARN MORE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diamond Blackfan Anemia (“DBA”) is a rare inherited bone marrow failure syndrome, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells. This failure causes DBA patients to become severely anemic. It is important to note that this anemia is not the result of adeficiency
RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. RESEARCH | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Research. Because of our families’ continuous support, the DBAF has been able to fund many important research projects. These awards have been International, supporting research in England, France, Sweden, and Italy in addition to awards made here in the US.TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
COVID-19 & VACCINE UPDATES FROM THE DBAR 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 newinformation
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
FUNDRAISING
Fundraising. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is proud to fund research projects and acknowledges that it is the hard work, coupled with the love and generosity of our families and friends, which enables us to continue our efforts. COVID-19 AND THE COVID-19 VACCINES VACCINATIONS 1. Can you please explain the differences between the new mRNA vaccines (Pfizer and Moderna) and the more “traditional” vaccines like the adenovirus-based vaccines (Johnson & Johnson and AstraZeneca)? The goal of a vaccine is to train the immune system to recognize a disease so when you are exposed to FAQS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Major side effects when these drugs are used in high doses for a long time include weight gain, water and salt retention, high blood pressure, muscle weakness, osteoporosis (brittle bones occasionally leading to fractures), wounds that won’t heal, headaches, growth problems, eye diseases such as cataracts and glaucoma, and thedisruption of
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.FAMILIESRESEARCHFUNDRAISINGNEWS & EVENTSRESOURCESABOUT US Latest News & Events April 9, 2021 COVID-19 & Vaccine Updates from the DBAR Many thanks to the DBAR team for taking the time to answer Continue Reading » Posted in: News, Spotlight Stories April 14, 2020 Dr. Adrianna Vlachos Answers Your COVID-19 Questions FAMILIES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESHISTORY OF DIAMOND BLACKFAN ANEMIACBC RESULTS FOR ANEMIA For Families. Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONAMERICAN SICKLE CELL ANEMIA FOUNDATIONCOOLEY S ANEMIAFOUNDATION
Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. DONATE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONDIAMOND BLACKFAN ANEMIADIAMOND BLACKFAN ANEMIA WIKIDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PICTURES Please Donate. Thank you for your interest in Diamond Blackfan Anemia and for your willingness to help our very special patients. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is a 501(c)(3) tax-exempt organization and your donation is tax-deductible to the fullest extent allowed by law. DIAGNOSIS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diagnosis. There are over 800 patients with DBA registered with the DBA Registry (“DBAR”). Each year, approximately 25 to 35 new cases of DBA will be diagnosed in the United States and Canada. DBA is an equal opportunity syndrome, affecting males and females and all ethnicities equally. Most patients are diagnosed with DBA within thefirst
TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. DIAMOND BLACKFAN ANEMIA, GENETICS, AND YOU Diamond Blackfan Anemia, Genetics, and You Q Is Diamond Blackfan Anemia (DBA) a genetic disorder? A es, DBA is a genetic disorder. In about half of families Y IN VITRO FERTILIZATION AND PREIMPLANTATION GENETIC DIAGNOSISWEB VIEW In Vitro Fertilization and Pre-Implantation Genetic Diagnosis. Goal: Child unaffected by a genetic (hereditary) illness defined by a known genetic mutation. Secondary goal: “Creating” a child unaffected by the genetic illness who is a transplant donor for the affected child | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.FAMILIESRESEARCHFUNDRAISINGNEWS & EVENTSRESOURCESABOUT US Latest News & Events April 9, 2021 COVID-19 & Vaccine Updates from the DBAR Many thanks to the DBAR team for taking the time to answer Continue Reading » Posted in: News, Spotlight Stories April 14, 2020 Dr. Adrianna Vlachos Answers Your COVID-19 Questions FAMILIES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESHISTORY OF DIAMOND BLACKFAN ANEMIACBC RESULTS FOR ANEMIA For Families. Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONAMERICAN SICKLE CELL ANEMIA FOUNDATIONCOOLEY S ANEMIAFOUNDATION
Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. DONATE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONDIAMOND BLACKFAN ANEMIADIAMOND BLACKFAN ANEMIA WIKIDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PICTURES Please Donate. Thank you for your interest in Diamond Blackfan Anemia and for your willingness to help our very special patients. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is a 501(c)(3) tax-exempt organization and your donation is tax-deductible to the fullest extent allowed by law. DIAGNOSIS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diagnosis. There are over 800 patients with DBA registered with the DBA Registry (“DBAR”). Each year, approximately 25 to 35 new cases of DBA will be diagnosed in the United States and Canada. DBA is an equal opportunity syndrome, affecting males and females and all ethnicities equally. Most patients are diagnosed with DBA within thefirst
TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. DIAMOND BLACKFAN ANEMIA, GENETICS, AND YOU Diamond Blackfan Anemia, Genetics, and You Q Is Diamond Blackfan Anemia (DBA) a genetic disorder? A es, DBA is a genetic disorder. In about half of families Y IN VITRO FERTILIZATION AND PREIMPLANTATION GENETIC DIAGNOSISWEB VIEW In Vitro Fertilization and Pre-Implantation Genetic Diagnosis. Goal: Child unaffected by a genetic (hereditary) illness defined by a known genetic mutation. Secondary goal: “Creating” a child unaffected by the genetic illness who is a transplant donor for the affected child LEARN MORE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diamond Blackfan Anemia (“DBA”) is a rare inherited bone marrow failure syndrome, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells. This failure causes DBA patients to become severely anemic. It is important to note that this anemia is not the result of adeficiency
RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. ABOUT US | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. About the DBA Foundation Fighting to Find the Cause and Cure for Diamond Blackfan Anemia. The Diamond Blackfan Anemia Foundation, Inc. (DBAF), founded in 1994, has adopted the following mission statement: “to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. RESEARCH | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Research. Because of our families’ continuous support, the DBAF has been able to fund many important research projects. These awards have been International, supporting research in England, France, Sweden, and Italy in addition to awards made here in the US.TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
FUNDRAISING
Fundraising. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is proud to fund research projects and acknowledges that it is the hard work, coupled with the love and generosity of our families and friends, which enables us to continue our efforts. CONTACT | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. For additional information or to add a DBA patient’s photo, your family’s link, news story links, and DBA fundraising announcements to our site, please contact: Diamond Blackfan Anemia Foundation, Inc. P.O. Box 1092. West Seneca, New York 14224. dbafoundation@juno.com.CLINICAL TRIALS
Clinical Trials. Listed below are clinical trials which have been added or updated in the last 90 days. If you would like to see the full list of clinical trials please click here. French National Registry of Bone Marrow Failures. Condition: Bone Marrow Failure Syndrome. Intervention: Other: Bone Marrow Failure. FAQS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Frequently Asked Questions. What is Diamond Blackfan Anemia? Diamond Blackfan Anemia (DBA) is a rare blood disorder. In DBA, the bone marrow (the center of the bone where blood cells are made) does not make enough red blood cells that carry oxygen throughout the body. | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.FAMILIESRESEARCHFUNDRAISINGNEWS & EVENTSRESOURCESABOUT US Latest News & Events April 9, 2021 COVID-19 & Vaccine Updates from the DBAR Many thanks to the DBAR team for taking the time to answer Continue Reading » Posted in: News, Spotlight Stories April 14, 2020 Dr. Adrianna Vlachos Answers Your COVID-19 Questions FAMILIES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESHISTORY OF DIAMOND BLACKFAN ANEMIACBC RESULTS FOR ANEMIA For Families. Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONAMERICAN SICKLE CELL ANEMIA FOUNDATIONCOOLEY S ANEMIAFOUNDATION
Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. DONATE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONDIAMOND BLACKFAN ANEMIADIAMOND BLACKFAN ANEMIA WIKIDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PICTURES Please Donate. Thank you for your interest in Diamond Blackfan Anemia and for your willingness to help our very special patients. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is a 501(c)(3) tax-exempt organization and your donation is tax-deductible to the fullest extent allowed by law. DIAGNOSIS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diagnosis. There are over 800 patients with DBA registered with the DBA Registry (“DBAR”). Each year, approximately 25 to 35 new cases of DBA will be diagnosed in the United States and Canada. DBA is an equal opportunity syndrome, affecting males and females and all ethnicities equally. Most patients are diagnosed with DBA within thefirst
TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. DIAMOND BLACKFAN ANEMIA, GENETICS, AND YOU Diamond Blackfan Anemia, Genetics, and You Q Is Diamond Blackfan Anemia (DBA) a genetic disorder? A es, DBA is a genetic disorder. In about half of families Y IN VITRO FERTILIZATION AND PREIMPLANTATION GENETIC DIAGNOSISWEB VIEW In Vitro Fertilization and Pre-Implantation Genetic Diagnosis. Goal: Child unaffected by a genetic (hereditary) illness defined by a known genetic mutation. Secondary goal: “Creating” a child unaffected by the genetic illness who is a transplant donor for the affected child | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.FAMILIESRESEARCHFUNDRAISINGNEWS & EVENTSRESOURCESABOUT US Latest News & Events April 9, 2021 COVID-19 & Vaccine Updates from the DBAR Many thanks to the DBAR team for taking the time to answer Continue Reading » Posted in: News, Spotlight Stories April 14, 2020 Dr. Adrianna Vlachos Answers Your COVID-19 Questions FAMILIES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESHISTORY OF DIAMOND BLACKFAN ANEMIACBC RESULTS FOR ANEMIA For Families. Being diagnosed with a rare, chronic disorder may be a challenging and overwhelming journey for patients and their families and friends. Not knowing where to turn or how to proceed faces all of us at many times as we manage the many physical, emotional, and social aspects of living with Diamond Blackfan Anemia. RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONAMERICAN SICKLE CELL ANEMIA FOUNDATIONCOOLEY S ANEMIAFOUNDATION
Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. DONATE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC.DIAMOND BLACKFAN ANEMIA FOUNDATIONDIAMOND BLACKFAN ANEMIADIAMOND BLACKFAN ANEMIA WIKIDIAMOND BLACKFAN ANEMIA PROGNOSISBLACKFAN ANEMIA PICTURESDIAMOND BLACKFAN ANEMIA PICTURES Please Donate. Thank you for your interest in Diamond Blackfan Anemia and for your willingness to help our very special patients. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is a 501(c)(3) tax-exempt organization and your donation is tax-deductible to the fullest extent allowed by law. DIAGNOSIS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diagnosis. There are over 800 patients with DBA registered with the DBA Registry (“DBAR”). Each year, approximately 25 to 35 new cases of DBA will be diagnosed in the United States and Canada. DBA is an equal opportunity syndrome, affecting males and females and all ethnicities equally. Most patients are diagnosed with DBA within thefirst
TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
CAMP SUNSHINE
Camp Sunshine DBA Family Meeting 2017- Another Memorable Year! 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. DIAMOND BLACKFAN ANEMIA, GENETICS, AND YOU Diamond Blackfan Anemia, Genetics, and You Q Is Diamond Blackfan Anemia (DBA) a genetic disorder? A es, DBA is a genetic disorder. In about half of families Y IN VITRO FERTILIZATION AND PREIMPLANTATION GENETIC DIAGNOSISWEB VIEW In Vitro Fertilization and Pre-Implantation Genetic Diagnosis. Goal: Child unaffected by a genetic (hereditary) illness defined by a known genetic mutation. Secondary goal: “Creating” a child unaffected by the genetic illness who is a transplant donor for the affected child LEARN MORE | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Diamond Blackfan Anemia (“DBA”) is a rare inherited bone marrow failure syndrome, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells. This failure causes DBA patients to become severely anemic. It is important to note that this anemia is not the result of adeficiency
RESOURCES | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Caitlyn – 9 years. DBA has affected our lives in ways we could have never imagined. It has introduced us to the most amazing people – from the dedicated doctors to the wonderful families who are also dealing with DBA. They all exemplify the power of human spirit and are family. View All Testimonials. ABOUT US | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. About the DBA Foundation Fighting to Find the Cause and Cure for Diamond Blackfan Anemia. The Diamond Blackfan Anemia Foundation, Inc. (DBAF), founded in 1994, has adopted the following mission statement: “to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. RESEARCH | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Research. Because of our families’ continuous support, the DBAF has been able to fund many important research projects. These awards have been International, supporting research in England, France, Sweden, and Italy in addition to awards made here in the US.TREATMENT OPTIONS
Treatment Options. Corticosteroid therapy includes taking a prescription steroid medication, Prednisone or Prednisolone, to make the patient’s bone marrow create red blood cells. To date, it is not understood how or why steroids cause the bone marrow to make red blood cells. The goal of steroid therapy is to allow the patient’s bonemarrow
DBA REGISTRY
Room 255. New Hyde Park, NY 11040. Toll-free Telephone: 1-888-884-DBAR (3227) TEL: 1- (516) 562-1504. FAX: 1- (516) 562-1599. E-Mail Address: eatsidaf@nshs.edu. For more information about DBAR, please go towww.dbar.org.
FUNDRAISING
Fundraising. The Diamond Blackfan Anemia Foundation, Inc. (DBAF) is proud to fund research projects and acknowledges that it is the hard work, coupled with the love and generosity of our families and friends, which enables us to continue our efforts. CONTACT | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. For additional information or to add a DBA patient’s photo, your family’s link, news story links, and DBA fundraising announcements to our site, please contact: Diamond Blackfan Anemia Foundation, Inc. P.O. Box 1092. West Seneca, New York 14224. dbafoundation@juno.com.CLINICAL TRIALS
Clinical Trials. Listed below are clinical trials which have been added or updated in the last 90 days. If you would like to see the full list of clinical trials please click here. French National Registry of Bone Marrow Failures. Condition: Bone Marrow Failure Syndrome. Intervention: Other: Bone Marrow Failure. FAQS | DIAMOND BLACKFAN ANEMIA FOUNDATION, INC. Frequently Asked Questions. What is Diamond Blackfan Anemia? Diamond Blackfan Anemia (DBA) is a rare blood disorder. In DBA, the bone marrow (the center of the bone where blood cells are made) does not make enough red blood cells that carry oxygen throughout the body.Skip to Content
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> 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. It is because of our > passion to ensure our loved ones a better life that we remain > solidly committed to our mission. Dawn. M. BaumgardnerExecutive Director
FAMILY Resources RESEARCH ResourcesSPOTLIGHT STORY
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 personalmedical team.
Click to read the Q&A document added on 4/9/2021. COVID and Vaccine QuestionsContinue Reading »
LATEST NEWS & EVENTSApril 9, 2021
COVID-19 & VACCINE UPDATES FROM THE DBAR Many thanks to the DBAR team for taking the time to answer Continue Reading » Posted in: News , Spotlight Stories April 14, 2020 DR. ADRIANNA VLACHOS ANSWERS YOUR COVID-19 QUESTIONS On Saturday, April 11, the Diamond Blackfan Anemia Foundation (DBAF) welcomed Dr. Continue Reading » Posted in: News , Spotlight Stories January 14,2019
CAMP SUNSHINE APPLICATIONS ARE AVAILABLE NOW! The Diamond Blackfan Anemia Foundation (DBAF) is proud to announce our 12th national family retreat. Continue Reading » Posted in: Camp Sunshine, Misc
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