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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.
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