National Resources

Center for Jewish Geneticswww.jewishgenetics.org – 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 Centerwww.victorcenters.org – 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 Consortiumwww.jewishgeneticdiseases.org – 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 Lifelinewww.chailifeline.org – 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)www.geneticalliance.org – a leading nonprofit health advocacy organization committed to transforming health through genetics.

Genetic Disease Foundationwww.geneticdiseasefoundation.org – 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 Centerwww.genome.gov/10000409 – provides information for patients, families, health care providers and the general public.

Hide and Seek Foundation for Lysosomal Disease Researchwww.hideandseek.org – 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 Foundationwww.marchofdimes.com – 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 Internationalwww.medhelp.org – allows the public to find conditions and disorders using a search feature.

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

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

National Institutes of Health Office of Rare Diseaseshttp://rarediseases.info.nih.gov – government site that offers a wealth of information for those affected by rare diseases.

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

Program for Jewish Genetic Health of Yeshiva University/Albert Einstein College of Medicinewww.yu.edu/genetichealth –  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 www.jewishgenetics.org, which has a comprehensive list of disease-related resources in their links section.

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