Resources
IBMFS Newsletters
Disease-specific Websites
- Diamond Blackfan Anemia Foundation, Inc.
- Diamond Blackfan Anemia Registry
- Team Telomere
- Fanconi Anemia
- Fanconi Canada
- Shwachman Diamond Syndrome Foundation
- Severe Chronic Neutropenia International Registry
- Aplastic Anemia & MDS International Foundation, Inc.
- Schwachman-Diamond Syndrome Registry
General Sites for Information about Bone Marrow Failure, Cancer, or Genetics:
- American Cancer Society
- NIH Clinical Center Protocol
- National Organization for Rare Disorders
- Online Mendelian Inheritance in Man – List of Human Genes and Phenotypes
- Gene Reviews
- National Society of Genetic Counselors
Videos:
- Telomere Biology and Cancer Risk with Dr. Sharon Savage (full)
- Fanconi Anemia 101, Dr. Blanche P. Alter
How can I join?
Individuals with one of the inherited bone marrow failure syndromes and their family members are encouraged to participate.
Phone: 1-800-518-8474 to speak with a member of our research team
Email: NCIFamilyStudyReferrals@nih.gov