Rare Disease News

Family Moves Across State Lines to Receive Better Access

Published December 22, 2016 by NORD

Categorized in -

Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational treatment, and a near-fatal infection. When Gabby was born …

Continue reading “Family Moves Across State Lines to Receive Better Access”

A Message from Our President and CEO

Published December 20, 2016 by NORD

Categorized in -

“When you are faced with a difficult health challenge, you need to be able to turn to a trusted source for support and advice – much like many people battling …

Continue reading “A Message from Our President and CEO”

Reflections on FDA Listening Session

Published December 17, 2016 by NORD

Categorized in -

Advocacy

Earlier this week, I attended a listening session with the Commissioner of the FDA, Dr. Robert M. Califf. As a new employee in the NORD Policy Office, this was my …

Continue reading “Reflections on FDA Listening Session”

President Signs 21st Century Cures Medical Innovation Bill Into Law

Published December 13, 2016 by NORD

Categorized in -

Today, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. The bill includes many provisions that will improve the discovery, development, and delivery …

Continue reading “President Signs 21st Century Cures Medical Innovation Bill Into Law”

State Report Card to Help People with Rare Diseases

Published December 13, 2016 by NORD

Categorized in -

Washington, 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 …

Continue reading “State Report Card to Help People with Rare Diseases”

Expansion of Medical Foods Coverage for Military Families Heads to the President, Having Passed in the Senate

Published December 8, 2016 by NORD

Categorized in -

Advocacy

We are pleased to announce that today that the United States Senate has passed the National Defense Authorization Act (S.2943) with language substantially expanding coverage for medical foods in the …

Continue reading “Expansion of Medical Foods Coverage for Military Families Heads to the President, Having Passed in the Senate”

Senate Passes Landmark 21st Century Cures Act

Published December 7, 2016 by NORD

Categorized in -

The President is expected to sign the bill into law later this week.

House Votes to Expand Medical Foods Coverage for Military Families

Published December 2, 2016 by NORD

Categorized in -

Advocacy

We are pleased to announce that today the House of Representatives has passed the National Defense Authorization Act (S.2943) with language that substantially expands coverage for medical foods in the …

Continue reading “House Votes to Expand Medical Foods Coverage for Military Families”

House to Vote on New Version of 21st Century Cures Act Tomorrow

Published November 29, 2016 by NORD

Categorized in -

Advocacy

We can’t stop now. #CuresNow has not yet passed. Please consider calling your Congressmen today to add your voice!

November 15th Day of Action: 21st Century Cures

Published November 15, 2016 by NORD

Categorized in -

Advocacy

On Tuesday, November 15th, take action to support the 21st Century Cures Act! This vital piece of legislation includes billions of dollars in new funding for critical research at the …

Continue reading “November 15th Day of Action: 21st Century Cures”

Rare Disease News

Access State Report Card Data