August 31, 2017
TOPIC: Featured News, Medical, Patients & Members, Research, Industry, Events
Posted at August 8, 2017 12:39 pm by Mary Dunkle
In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood and bone marrow known as acute lymphoblastic leukemia (ALL).
Approximately… Read More
August 15, 2017
TOPIC: Featured News, Medical, Patients & Members, Advocacy, Industry, Events, Get Involved
Posted at August 8, 2017 09:49 am by Lisa Sencen
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: Featured News, Medical, Research, Industry, Events, Get Involved
Posted at July 7, 2017 09:54 am by Lisa Sencen
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, Patients & Members, Industry
Posted at May 5, 2017 02:54 pm by
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: Medical, Patients & Members, Industry, Events, Get Involved
Posted at August 8, 2016 02:50 pm by Lisa Sencen
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