Dai m o n D Bl ac k fa n an e m ai Resou R ces Information ...
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For more information call: 1-877-DBA-NURSE DBA Fact Sheet L I V I N G W I T H D B A 1 ORGANIZATIONS Daniella Maria Arturi Foundation (DMAF) Provides financial support for the research of DBA, increases awareness of DBA among medical professionals and federal policy makers, and coordinates the Annual DBA International Scientific Consensus Conference. http://www.dmaf.org Diamond Blackfan Anemia Foundation Funds medical research projects, provides emotional support to families affected by DBA, organizes DBA family meetings and publishes the DBA newsletter twice a year. http://www.dbafoundation.org Diamond Blackfan Anemia Registry of North America Established in 1993 to improve the understanding of DBA patients and their families. The DBAR collects clinical data on DBA patients and their families and offers participation in research protocols. http://www.dbar.org NATIONAL RESOURCE CENTERS Schneider Children’s Hospital Adrianna Vlachos, MD Assistant Professor of Pediatrics Albert Einstein College of Medicine Head, Bone Marrow Failure Program Director, Diamond Blackfan Anemia Registry Hematology/Oncology 269-01 76th Avenue, Room 255 New Hyde Park, NY 11040 Phone: 718-470-3024 DBA Nurse Hotline: 1-877-DBA-NURSE (322-6877) University of Texas Southwestern Medical Center George Buchanan, MD Professor of Pediatrics Director, Division of Hematology-Oncology Department of Pediatrics 5323 Harry Hines Boulevard Dallas, TX 75390-9063 Phone: 214-456-2382 Stanford University Medical Center Bertil Glader, MD, PhD Stanford University School of Medicine Lucile Packard Children’s Hospital Professor of Pediatrics and Pathology Division of Hematology/Oncology 1000 Welch Road, Suite 300 Palo Alto, CA 94304 Phone: 650-723-5535 Children’s Hospital Boston Ellis Neufeld, MD, PhD Associate Chief Division of Hematology/Oncology 300 Longwood Avenue Fegan 7 Boston, MA 02115 Phone: 617-355-8246 WEB & E-MAIL-BASED SUPPORT GROUPS [email protected] An electronic family support group. Semi- moderated Web site and e-mail group for DBA parents and patients. To subscribe, e-mail: [email protected] or go to the website at: http://health.groups.yahoo.com/group/blackfan [email protected] Semi-moderated Web site and e-mail group for adult patients only. To subscribe, e-mail: [email protected] or go to the website at: http://health.groups.yahoo.com/group/dba21 GOVERNMENT ORGANIZATIONS Centers for Disease Control and Prevention (CDC) Divison of Blood Disorders National Center on Birth Defects and Developmental Disabilities Phone: 800-CDC-INFO (800-232-4636) http://www.cdc.gov/ncbddd/hbd/default.htm DIAMOND BLACKFAN ANEMIA RESOURCES Information for people with Diamond Blackfan anemia (DBA), and their families.
Transcript of Dai m o n D Bl ac k fa n an e m ai Resou R ces Information ...
For more information call:
1-877-DBA-NURSE
DBA Fact Sheet
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IVING WITH DBA
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OrganizatiOns
Daniella Maria Arturi Foundation (DMAF)Provides financial support for the research of DBA, increases awareness of DBA among medical professionals and federal policy makers, and coordinates the Annual DBA International Scientific Consensus Conference. http://www.dmaf.org
Diamond Blackfan Anemia FoundationFunds medical research projects, provides emotional support to families affected by DBA, organizes DBA family meetings and publishes the DBA newsletter twice a year. http://www.dbafoundation.org
Diamond Blackfan Anemia Registry of North AmericaEstablished in 1993 to improve the understanding of DBA patients and their families. The DBAR collects clinical data on DBA patients and their families and offers participation in research protocols. http://www.dbar.org
natiOnal resOurce centers
Schneider Children’s HospitalAdrianna Vlachos, MDAssistant Professor of PediatricsAlbert Einstein College of MedicineHead, Bone Marrow Failure ProgramDirector, Diamond Blackfan Anemia RegistryHematology/Oncology269-01 76th Avenue, Room 255New Hyde Park, NY 11040Phone: 718-470-3024DBA Nurse Hotline: 1-877-DBA-NURSE (322-6877)
University of Texas Southwestern Medical CenterGeorge Buchanan, MDProfessor of PediatricsDirector, Division of Hematology-OncologyDepartment of Pediatrics5323 Harry Hines BoulevardDallas, TX 75390-9063Phone: 214-456-2382
Stanford University Medical CenterBertil Glader, MD, PhDStanford University School of MedicineLucile Packard Children’s HospitalProfessor of Pediatrics and PathologyDivision of Hematology/Oncology1000 Welch Road, Suite 300Palo Alto, CA 94304Phone: 650-723-5535
Children’s Hospital BostonEllis Neufeld, MD, PhDAssociate ChiefDivision of Hematology/Oncology300 Longwood AvenueFegan 7Boston, MA 02115Phone: 617-355-8246
Web & e-mail-based suppOrt grOups
[email protected] electronic family support group. Semi-moderated Web site and e-mail group for DBA parents and patients. To subscribe, e-mail: [email protected] or go to the website at:http://health.groups.yahoo.com/group/blackfan
[email protected] Web site and e-mail group for adult patients only. To subscribe, e-mail: [email protected] or go to the website at: http://health.groups.yahoo.com/group/dba21
gOvernment OrganizatiOns
Centers for Disease Control and Prevention (CDC)Divison of Blood DisordersNational Center on Birth Defects and Developmental DisabilitiesPhone: 800-CDC-INFO (800-232-4636)http://www.cdc.gov/ncbddd/hbd/default.htm
DiamonD Blackfan anemia ResouRces Information for people with Diamond Blackfan anemia (DBA), and their families.
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National Institutes of Health (NIH)National Heart, Lung, and Blood InstituteHealth Information CenterProvides information and resources.Phone: 301-592-8573 TTY: 240-629-3255 http://www.nhlbi.nih.gov
National Institutes of Health (NIH) Clinical TrialsNational Heart, Lung, and Blood InstituteMedical care provided at no charge to patients who meet criteria for NIH clinical trials Phone: 301-496-3841 E-mail: [email protected]://www.cc.nih.gov
blOOd transfusiOn
National Library of MedicineMedlinePlusInformation and resources.http://www.nlm.nih.gov/medlineplus/bloodtransfusionanddonation.html
stem cell transplant
BMT InfoNetInformation and support for transplant patients and their families.Phone: 1-847-433-3313 Toll-free: 1-888-597-7674 (during regular business hours)E-mail at: [email protected]://www.bmtinfonet.org
National Bone Marrow Transplant LinkHelps patients, as well as their caregivers, families and the health care communities meet the many challenges of stem cell transplant by providing information and support services.Phone: 1-800-LINK-BMT ( 800-546-5268)or 248-358-1886 http://www.nbmtlink.org
National Marrow Donor Program (NMDP)Provides a registry of potential volunteer stem cell donors, resources for patients and physicians, and conducts research.Phone: 1-800-627-7692 Office of Patient Advocacy: 1-888-999-6743 http://www.marrow.org/index.html
cancer
American Cancer SocietyPublications on cancer, treatment options, patient care, and support groups.Phone: 800-227-2345 http://www.cancer.org
National Cancer InstituteEtiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS). This is a study of the epidemiology and natural history of DBA in patients and their families. http://www.marrowfailure.cancer.gov
rare diseases
National Institutes of HealthOffice of Rare DiseasesInformation about rare diseases, including links to support groups. http://www.rarediseases.info.nih.gov
National Organization for Rare Disorders (NORD)Information and patient networking.Phone: 800-999-6673 or 203-744-0100 Email: [email protected]://www.rarediseases.org
HealtH insurance
Medicaid Health InsuranceMedicaid health insurance provides health care coverage for some people who cannot afford it.http://www.cms.hhs.gov/home/medicaid.asp
COBRA Health InsuranceCOBRA provides certain people with temporary continuation of health coverage at group rates. http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.html
OtHer resOurces
Camp SunshineIts mission is to address the impact of life-threatening or chronic illness on every member of the family.Phone: 207-655-3800http://www.campsunshine.org
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