Related organizations

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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.

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.

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.

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 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

Delete Blood Cancer DKMS
Delete Blood Cancer DKMS is the world’s largest marrow donor center with over 1.7 million registered marrow donors. Since its founding in Germany in 1991, DKMS has facilitated more than 14,000 transplants. The mission of DKMS is to give every blood cancer patient a second chance at life by recruiting marrow donors from every race and ethnicity. Potential donors can register free. We are a non-profit accredited by NMDP.

Fundacion Comparte Vida, A.C. - Mexico
The Fundacion Comparte Vida, a non-profit organization founded in 1998 in Mexico City, is engaged in fighting leukemia and other hematological or genetic diseases by connecting patients in need of bone marrow transplants with potential donors.

Be the Match Registry
Be the Match’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.


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 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.

Gene Reviews: Fanconi Anemia
This site contains a comprehensive discussion of Fanconi anemia by Toshiyasu Taniguchi, MD, PhD and Akiko Shimamura, MD, PhD of Fred Hutchinson Cancer Research Institute, and 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.

Diamond Blackfan Anemia Foundation
The mission of the Diamond Blackfan Anemia Foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to providing patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.

Dyskeratosis Congenita Outreach, Inc.
Dyskeratosis Congenita Outreach, Inc. is a grassroots, volunteer-operated foundation serving patients and families affected by DC around the world. DCO emerged in 2008 following a DC Clinical Research Workshop at the National Institutes of Health in Bethesda, Md., which brought together families, scientists and clinicians. Its mission is to provide information and support to families affected by DC worldwide, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

of note

The first Joel Walker Scientific Focus Meeting has been announced learn more...

FARF Receives Grant to Expand Development Program learn more...

Despite a rare, incurable disease, Amy Frohnmayer Winn ran joyfully through life learn more...