Published July 17, 2015 by NORD
A win for the rare disease community Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported. The bill would make …
Continue reading “Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate”
Read morePublished July 10, 2015 by NORD
Washington, D.C. – July 10, 2015 – The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s approval …
Continue reading “NORD Issues Statement on House’s Approval of 21st Century Cures Initiative”
Read morePublished June 17, 2015 by NORD
Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” …
Continue reading “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases”
Read morePublished June 3, 2015 by NORD
NORD has finalized its comments on 21st Century Cures Act. Read them here: NORD Comments on the 21st Century Cures Act.
Read morePublished May 28, 2015 by NORD
Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …
Read morePublished May 21, 2015 by NORD
NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …
Continue reading “NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative”
Read morePublished April 28, 2015 by NORD
Paul Melmeyer, NORD’s Assistant Director of Public Policy, attended the FDA’s public meeting on Chagas Disease Patient-Focused Drug Development on April 28. Chagas is a rare parasitic disease (read NORD’s …
Continue reading “FDA Public Meeting on Chagas Disease Patient-Focused Drug Development”
Read morePublished December 23, 2014 by NORD
The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life
Read morePublished December 23, 2014 by NORD
I’m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October
Read morePublished December 23, 2014 by NORD
Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her …
Continue reading “Multiple Endocrine Neoplasia Type 1: One Family’s Fight”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.