Scroll
To Top

March 15, 2017

TOPIC: Featured News, Patient Stories

Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)

Posted by

2017 Honoree
Rare Impact Award

Christine Grube

Christine Grube

After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient injected with an experimental treatment so that other children with GAN, including her younger sister, Amanda, would have the chance at a… Read More

March 15, 2017

TOPIC: Featured News, Patient Stories

Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree

Posted by

2017 Honoree
Rare Impact Award

Dr. Robert Desnick

Robert J. Desnick, M.D., Ph.D.

“It’s very satisfying when your research efforts lead to new diagnostics or treatment for patients suffering from rare diseases.” This is the experience of Dr. Robert J. Desnick, whose pioneering work as a researcher and clinician has improved patient… Read More

March 15, 2017

TOPIC: Press Releases, Advocacy

NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)

Posted by Jennifer Huron

Washington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the Preserving Employee Wellness Programs Act (H.R.1313):

“Last week, the House Committee on Education and the Workforce voted to advance the Preserving Employee Wellness Programs Act (H.R.1313). This bill exempts employee… Read More

March 15, 2017

TOPIC: Press Releases, Events

NORD Announces Honorees for the 2017 Rare Impact Awards

Posted by Jennifer Huron

ria_jointheconversation_dateWashington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C.

The Rare Impact Awards is a charity event that celebrates those who are boldly leading… Read More

March 8, 2017

TOPIC: Press Releases, Advocacy

NORD Issues Statement as House Committees Review the American Health Care Act

Posted by Jennifer Huron

Washington, D.C., March 8, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in advance of today’s hearings on the American Health Care Act:

“Monday evening, House Republicans released their long-awaited Affordable Care Act (ACA) replacement package called the American Health Care Act (AHCA). This… Read More