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Archives for: January 18th, 2018

State Report Card to Help People with Rare Diseases

Written by Jennifer Huron on December 13, 2016

rareactionnetworkWashington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders… Read More

Dawn Laney: 2016 Rare Impact Award Honoree

Written by Lisa Sencen on May 11, 2016

A leading expert in her field, Dawn Laney, M.S., C.G.C., C.C.R.C. is a genetic counselor, instructor, and program leader at Emory University in the Department of Human Genetics.  She manages Emory’s infusion center and lysosome storage disease clinical research, and is a sought-after specialist in Fabry Disease, a… Read More

NORD Awards New Research Grants for Rare Disease Research

Written by Jennifer Huron on February 18, 2016

 The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has awarded six new research grants to fund rare disease research.

“NORD research grants are funded primarily by patients, patient organizations, families and friends of patients who make possible the… Read More