Rare Disease News

What the Omnibus Bill Means for Rare Diseases

Published December 18, 2015 by NORD

Categorized in -

Advocacy

UPDATE (12/18/2015 12:20 p.m.): The House and Senate voted Friday to pass the omnibus spending bill that funds the government through September 2016. The House moved first, passing the government funding bill …

Continue reading “What the Omnibus Bill Means for Rare Diseases”

Get Involved in Your State on Rare Disease Day

Published December 17, 2015 by NORD

Categorized in -

On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Published December 10, 2015 by NORD

Categorized in -

Thanks to the support of our partners and donors, NORD has launched new initiatives that empower the rare disease community in every state and strengthen the patient voice in Washington D.C.

Pachyonychia Congenita Project

Published December 7, 2015 by NORD

Categorized in -

Connecting patients with Pachyonychia Congenita, PC Project says that it is “all about love”.

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Published December 4, 2015 by NORD

Categorized in -

When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Published December 2, 2015 by NORD

Categorized in -

Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related …

Continue reading “Be a Hero: Help NORD Educate Current and Future Medical Professionals”

National Spotlight on FDA and Duchenne Muscular Dystrophy: What This Means for Everyone with a Rare Disease

Published November 20, 2015 by NORD

Categorized in -

Next week, a Food and Drug Administration panel of experts will hold the first of two meetings to review two drugs designed to slow the muscle wasting effects associated with Duchenne …

Continue reading “National Spotlight on FDA and Duchenne Muscular Dystrophy: What This Means for Everyone with a Rare Disease”

NORD Supports Nomination of Dr. Califf for FDA Commissioner

Published November 17, 2015 by NORD

Categorized in -

Advocacy

The National Organization for Rare Disorders (NORD) today urged the Senate HELP Committee to move quickly to advance the confirmation of Robert Califf, M.D., as the next Commissioner of the …

Continue reading “NORD Supports Nomination of Dr. Califf for FDA Commissioner”

Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Published November 9, 2015 by NORD

Categorized in -

Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 …

Continue reading “Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life”

NORD Releases First-Ever State Progress Report for Rare Diseases

Published October 22, 2015 by NORD

Categorized in -

Announcing NORD’s State Progress Report, a Roadmap for State Improvement.

Rare Disease News

Access State Report Card Data