 This act will
allow individuals and families better access to
clinical trials without the income-related
barriers.
Today, 30 million people and their
families have added hope that their tremendous
unmet medical needs are one step closer to being
addressed. Studying one rare disease can often
lead to understanding of other rare diseases, as
well as understanding of more common diseases.
- Peter
Saltonstall, President and CEO, National
Organization of Rare Disorders
(NORD)
To learn more about the Ensuring Access to
Clinical Trials Act
(S. 139), visit the link below and stay
tuned to future calls for action. Together we
can!
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NTSAD,
JScreen/Emory University, and Counsyl have
entered into a formal agreement to fund and
conduct a research study that will provide
essential information for the future transition
of Tay-Sachs enzyme screening to newer genetic
screening testing methods. 
The 
diseases. It
will also help us begin to build a deeper
understanding of the prevalence of Tay-Sachs and
Sandhoff disease in Europe and the onset of the
different symptoms and the various different
gene mutations of the diseases."
