August 15, 2017
TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage
Posted at August 8, 2017 09:49 am by Christina Jensen
It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare disease stakeholders come together to advance the dialogue on these… Read More
July 20, 2017
TOPIC: Events, Featured News, Get Involved, Industry, Medical, Research
Posted at July 7, 2017 09:54 am by Christina Jensen
Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.
The meeting, which takes place on an annual basis, brings… Read More
May 8, 2017
TOPIC: Featured News, Industry, Patients & Members
Posted at May 5, 2017 02:54 pm by Amanda DeBellis
Washington, D.C., May 8, 2017—On Friday, the National Health Council (NHC) and the National Organization for Rare Disorders (NORD), submitted a letter from more than 120 patient advocacy organizations to members of Congress urging them to swiftly reauthorize the FDA user fees.
The letter, in part, reads, “The chronic and rare disease and disability patient communities… Read More
August 18, 2016
TOPIC: Events, Get Involved, Industry, Medical, Patients & Members
Posted at August 8, 2016 02:50 pm by Christina Jensen
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 – the theme for the 2016 poster session at… Read More
May 23, 2016
TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Patients & Members, Research
Posted at May 5, 2016 11:32 am by Christina Jensen
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, researchers and more as they trail-blaze the road ahead… Read More