Patient Resources

When you or a loved one is faced with a genetic disease it can be confusing and overwhelming. Getting the right information you need is vital. At the GDF, we believe in hope through knowledge.  Here, you can find information on genetic diseases, links to online resources, and specific answers to questions and help in locating physicians, genetic counselors who can provide immediate assistance.

Center for Jewish Genetic Diseases

The Center for Jewish Genetic Diseases at The Mount Sinai Medical Center in New York City is the first center in the world devoted to the study of diseases that affect Ashkenazi Jews. Established in 1982, the Center works to improve the diagnosis, treatment, and counseling of patients and their families suffering from Jewish genetic diseases. It also conducts intensive research to combat these inherited diseases. Learn more.

Clincial Trials

Participating in Mount Sinai’s clinical trials allows you to take advantage of innovative treatments as we work together to advance the future of medicine. Discover how The Mount Sinai Medical Center can offer you the most advanced and compassionate inpatient and outpatient care. Learn more.

Genetic Counseling

For help finding a genetic counselor please visit our Know Your Genes website.

Online Patient Communities

Rare Connect,” developed by The National Organization for Rare Disorders (NORD) and the European Rare Disease Organisation (EURODIS), offers access to online patient communities which can be an important source of information and support for patients and their loved ones. Learn more.

The GDF recently created the first online community for WHIM Syndrome at Rare Connect, which can be accessed on the Rare Connect website.

Bensfriends.org powers at least 33 online rare disease patient communities with thousands of members around the world including “Life with Fabry”.  Ben’s Friends Rare Diseases is for people affected by any rare disease that does not have its own community established.

If you are a newly diagnosed patient and are looking for information please visit our Newly Diagnosed Patient page.