National Resources

Center for Jewish – provides education and programming to the Jewish, professional and general communities. Their mission is to empower community members to seek out information and prevention strategies for Jewish genetic disorders and hereditary cancers. A close organizational partner, they have a robust web site, and we encourage you to explore their sections on diseases, resources and links, ethics, and advocacy.

Victor – like the Chicago Center, the Victor Center is devoted to ensuring comprehensive genetic education, screening and counseling services. Based primarily in Boston, Philadelphia and Miami, the Victor Center also conducts testing programs in other states and can be a potential resource for those outside of Arizona.

Jewish Genetic Diseases – The consortium is comprised of a group of individuals and organizations dedicated to increasing awareness and education about Jewish genetic diseases and encouraging timely and complete screening for all Jews. The web site includes links to Rabbi educational materials which may prove useful for our local clergy.

Chai – addresses the emotional, social, and financial needs of seriously ill children, their families, and communities, Chai Lifeline restores normalcy to family life, and better enables families to withstand the crises and challenges of serious pediatric illness.

Genetic Alliance (GA) – a leading nonprofit health advocacy organization committed to transforming health through genetics.

Genetic Disease – supports research initiatives both focused on improved testing options and treatment and prevention options, the efforts and further education of genetic counselors and health professionals, and the education of the greater public as a means of greatly reducing ultimately preventing the occurrence of various genetic disorders.

Genetic and Rare Diseases Information – provides information for patients, families, health care providers and the general public.

Hide and Seek Foundation for Lysosomal Disease – provides information and resources for those affected by lysosomal diseases including Gaucher disease, Mucolipidosis IV, Niemann-Pick disease and Tay-Sachs disease.

March of Dimes – aims to improve the health of babies by preventing birth defects, premature birth and infant mortality through increased research, community services, education and advocacy.

Med Help – allows the public to find conditions and disorders using a search feature.

MUMS National Parent-to-Parent – matches parents of children with rare diseases with others in hopes of building strong parent-to-parent support networks.

National Society of Genetic – Reliable resource for those in need of genetic counseling.

National Institutes of Health Office of Rare Diseases – government site that offers a wealth of information for those affected by rare diseases.

National Organization for Rare – general education, networking and news resource for a variety of rare diseases.

Program for Jewish Genetic Health of Yeshiva University/Albert Einstein College of –  established with the goal that no one in the Jewish community facing a genetic health issue be deprived of proper care due to lack of awareness, financial barriers or difficulty in navigating the healthcare system.  They provide the most affordable and accessible carrier screening in the New York metropolitan area, as well as a host of educational programs for the Rabbinical and lay communities.

Disease Resources

Please visit the Chicago Center for Jewish Genetic Disorders at, which has a comprehensive list of disease-related resources in their links section.

Bloom’s Syndrome Foundation (323) 933-4670
Canavan Foundation (877) 4-CANAVAN
Canavan Research Foundation (203) 746-2436
Jacob’s Cure Referred To
Cystic Fibrosis Foundation (800) FIGHT CF
Dysautonomia Foundation (212) 279-1066
FD Hope (919) 969-1414
Fanconi Anemia Research Fund (888) FANCONI
National Gaucher Foundation (800) 925-8885
ML4 Foundation (718) 434-5067
Mathew Forbes Romer Foundation (561) 477-0337
National Niemann-Pick Disease Foundation (877) 287-3672
National Tay-Sachs & Allied Diseases Association (800) 906-8723