Written by Jennifer Huron on November 3, 2016
Washington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients… Read More
Written by Jennifer Huron on October 5, 2016
Washington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases & Orphan Products Breakthrough Summit to be held Oct. 17-18… Read More
Written by Lisa Sencen on August 18, 2016
Advanced Pricing Deadline is Friday, August 26
Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.
Poster Abstracts are due Friday, August 19
Calling all researchers… Read More
Written by Lisa Sencen on June 7, 2016
Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass before the Senate is out of session until after the November election.
Senate… Read More
Written by Lisa Sencen on May 23, 2016
Save the date for the 2016 NORD Summit! Attendees can look forward to:
- Timely Topics
- Sessions on genetic innovation, collaborations across borders, reimbursement, pricing and access, off-label concerns, driving progress through policy and more.
- Inspiring Perspectives
- Hear from manufacturers, patients, advocates, legislative and regulatory leaders, academics,… Read More