Welcome to the New York State Rare Disease Alliance
A Place for Patients and Caregivers Who are the True Experts in Rare and Complex Disease Care
The NYS Rare Disease Alliance Inc, a 501 c 3 corporation, is an outgrowth of Albany Medical Center’s Rare Disease Forum. The goals of the NYS Rare Disease Alliance are: to improve the time it takes to diagnose diseases; to increase the effectiveness of managing the long-term complex and chronic care of patients; enable patients and caregivers full access and full portability of their medical records; the training of patient navigators specializing in rare diseases; enhancing the public’s knowledge of rare diseases as a major public health problem; and promoting basic science that benefits rare diseases and common diseases as well.
Rare diseases affect 32 million; it takes up to 7 years to get diagnosed on an average, after seeing 8 doctors, often getting misdiagnosed multiple times. The cause of the majority (80%) of rare diseases are genetic; striking children more frequently than adults and often resulting in fatalities.
The NYS Rare Disease Alliance acknowledges the breath of its goals, the lack of cures and standardized treatments and in light of those factors focuses on bringing together the heroes of rare complex medical challenges, the patients and their care givers.Ed Fennell President firstname.lastname@example.org