Local Resources
Facilities Providing Genetic Services in the Greater Phoenix Area (PDF)
Jewish Free Loan – www.jewishfreeloan.org or (602) 230-7983 – provides interest-free loans to individuals to help meet many basic needs, including medical care. Jewish Free Loan has several funds earmarked for medical needs which can be accessed when laboratory tests are uncovered by insurance and/or out-of-reach financially.
Jewish Marriage University – www.jewishphoenix.org/page.aspx?ID=103591 or (480) 634-8050 – a program of the Bureau of Jewish Education Center for Lifelong Jewish Learning. Jewish Marriage University (JMU) is a series of classes for serious couples, engaged couples, and the recently married. Coursework is designed to help them develop the necessary skills to foster a long, happy and loving relationship. Topics include communication, conflict resolution, money management, love, intimacy, sexuality, and family planning, all within the context of Jewish values and traditions. JMU classes are often scheduled on the same day as Jewish genetic disease screening events. Couples with Ashkenazi/Eastern European Jewish ancestry are encouraged to enroll in JMU during the day, and request the last genetic screening appointment time in the afternoon, in order to participate in both programs.
Council for Jews With Special Needs – www.cjsn.org or (480) 629-5343 – provides programs, resources and support to help all Jews with disabilities and their families to fulfill their spiritual, cultural and religious needs.
National Resources
National Society of Genetic Counselors – www.nsgc.org - resource for those in need of genetic counseling.
Chicago Center for Jewish Genetic Disorders – www.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 Center – http://www.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 Consortium – www.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 education materials which may prove useful for our local clergy.
Jewish Federations of North America - www.jewishfederations.org/page.aspx?id=163723 – set of resources compiled specifically for the Jewish community.
March of Dimes Foundation – www.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.
Genetic Alliance (GA) – www.geneticalliance.org – a leading nonprofit health advocacy organization committed to transforming health through genetics.
National Institutes of Health Office of Rare Diseases – http://rarediseases.info.nih.gov - government site that offers a wealth of information for those affected by rare diseases.
National Organization for Rare Disorders – www.rarediseases.org – general education, networking and news resource for a variety of rare diseases.
Genetic and Rare Diseases Information Center – www.genome.gov/10000409 - provides information for patients, families, health care providers and the general public.
Med Help International – www.medhelp.org - allows the public to find conditions and disorders using a search feature.
MUMS National Parent-to-Parent Network – www.netnet.net/mums - matches parents of children with rare diseases with others in hopes of building strong parent-to-parent support networks.
Genetic Disease Foundation - www.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.
Hide and Seek Foundation for Lysosomal Disease Research – www.hideandseek.org - provides information and resources for those affected by lysosomal diseases including Gaucher disease, Mucolipidosis IV, Niemann-Pick disease and Tay-Sachs disease.
Chai Lifeline - www.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.
Diseases
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 – (914) 673-2796 – www.jacobscure.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
