Related Organizations

Information provided on these web pages about medications, treatments or products should not be construed as medical instruction or scientific endorsement. Always consult your physician before taking any action based on this information.

Medical Resource Pages
Wish Foundations
Disease Support Groups
Bone Marrow Registries
Fanconi Anemia Science
Other Orphan Diseases (not FA)

Resource Pages:

American Society of Hematology
The mission of the American Society of Hematology (ASH) is to further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immunologic, hemostatic and vascular systems, by promoting research, clinical care, education, training, and advocacy in hematology.

Wish Foundations:

Candlelighters Childhood Cancer Foundation
Candlelighters Childhood Cancer Foundation is a national non-profit membership organization whose mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.

Make-a-Wish Foundation of America
The Make-A-Wish Foundation® grants wishes to children under the age of 18 with life-threatening illnesses.

Disease Support Groups:

Alliance of Genetic Support Groups
The Alliance of Genetic Support Groups, Inc., is a non-profit tax exempt organization founded in 1986 as a national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions.

Aplastic Anemia and MDS International Foundation
This organization is active in fighting Aplastic Anemia, Myelodysplastic Syndromes, and other bone marrow failure through newsletters, conferences, etc.

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CancerTrack.com
Cancer internet resource site for patients and doctors.

Children's Cancer Web
This guide has been written for educational purposes only. It cannot be used for diagnosing or treating a health problem or a disease.

Granny Barb and Art's Leukemia & BMT Resources
This site provides information about leukemia and bone marrow transplants, with links to online journals, clinical trials, cancer and medical site, and other helpful organizations.

Honeysuckle Foundation for Children with Cancer
This is a not-for-profit organization dedicated to helping children with cancer and their families maintain a reasonable quality of life during treatment.

InterNet Resources for Cancer
This guide contains over 100 pages of links to cancer-related information. Many sites contain information for both the public and for health professionals.

National Organization of Rare Diseases (NORD)
NORD is the only organization of its kind--a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities.

Oncolink
OncoLink was founded in 1994 by University of Pennsylvania cancer specialists with a mission to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge.

Bone Marrow Registries:

Caitlin Raymond International Registry
The Caitlin Raymond International Registry is a comprehensive resource for patients and physicians conducting a search for unrelated bone marrow or cord blood donors.

National Marrow Donor Program (NMDP)
The National Marrow Donor Program's mission is to facilitate successful transplants of hematopoietic cells from volunteer unrelated donors as life-saving therapy for patients of all racial and socioeconomic backgrounds.

The HLA Registry Foundation, Inc.
The mission of the HLA Registry is to assist patients with potentially fatal blood diseases in finding compatible unrelated donors for life-saving bone marrow transplants, including helping patients and their families raise funds for HLA tissue-typing.

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Fanconi Anemia Science:

Etiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS)
This is a National Cancer Institute study of the epidemiology and natural history of FA in patients and their families, focusing on potential complications such as leukemia or solid tumors, using questionnaires, thorough physical exams, laboratory studies, and age-appropriate cancer screening.

Fanconi Anemia: Hematology 101
This is a PowerPoint presentation by Blanche Alter, MD, MPH, of the Division of Cancer Epidemiology and Genetics, National Cancer Institute in Rockville, MD.

Fanconi Anemia Mutation Database: Rockefeller University
This database was established to increase the availability of information related to Fanconi Anemia. The site contains data that has been reported in the literature plus unpublished data for people who agree to follow certain guidelines.

Fanconi Anemia: Online Mendelian Inheritance in Man
This site describes Fanconi Anemia and discusses the clinical features of this condition. It contains abundant research information, and is designed primarily for health care professionals.

Gene Reviews: Fanconi Anemia
This site contains a comprehensive discussion of Fanconi anemia by Akiko Shimamura, MD, PhD; Lisa Moureau, MS; and Alan D'Andrea, MD of Dana-Farber Cancer Institute.

Other Orphan Diseases (Not FA):

Shwachman-Diamond America
A non-profit organized exclusively for charitable, educational and scientific purposes. This organization is established to support and encourage research of Shwachman-Diamond Syndrome (SDS) by providing grants to researchers and educating medical professionals of the need for research in the field of SDS. Shwachman-Diamond America educates physicians and families on various aspects of SDS and we also disseminate current medical information on SDS.