Resources for Rabbis
Partnering with Faith to Support Families and Reduce Genetic Risk
Wolfram Syndrome, particularly its Ashkenazi Jewish subtype, is a rare inherited disorder that can lead to vision loss, atypical diabetes, urinary dysfunction, and neurological challenges. Like Tay-Sachs disease, it is more prevalent among individuals of Ashkenazi Jewish descent due to a specific shared genetic variant passed through generations.
Rabbis have historically played a pivotal role in promoting awareness, ethical discussion and communal action around genetic health. This page is designed to help you support families, guide conversations around testing and lead your community with compassion and knowledge.
Why This Matters in the Jewish Community
Just as rabbinic leadership was instrumental in raising awareness and promoting carrier screening for Tay-Sachs disease, your influence today can help reduce the prevalence of the Ashkenazi subtype of Wolfram Syndrome.
Thanks in large part to rabbinic support, Tay-Sachs screening became a standard part of premarital counseling in many Jewish communities. As a result, the number of Tay-Sachs births in the U.S. dropped by over 90% since the 1970s. This model of compassionate, proactive leadership has the power to make a similar difference today with the Ashkenazi Jewish subtype of Wolfram syndrome.
Learn more about where to get tested for the Ashkenazi variant of Wolfram syndrome here.
How You Can Support Families
Encourage Informed Genetic Testing
Share information about carrier screening with your community
Encourage genetic counseling for young couples as part of their family planning and marriage preparation
Offer compassionate support to families processing a new diagnosis
Ways to Bring This to Your Community
Recognize Jewish Genetic Disease Awareness Week (first full week of February) and consider a dedicated Shabbat focused on health, caregiving and community support
Host an awareness event featuring medical experts, genetic counselors and families with lived experience to foster understanding and dialogue
Distribute educational materials such as flyers or social media content to share key information with your community
We’re Here to Support You Too
Rabbis are often the first people families turn to when facing difficult medical news. We want to support you with accurate, up-to-date information to help guide your community.
Please reach out to us for:
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