Posted at November 11, 2017 11:20 am by Jennifer Huron
Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases
Washington, D.C., November 28, 2017 – Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in… Read More
Posted at October 10, 2017 12:17 pm by Jennifer Huron
Danbury, CT and Washington, D.C., October 13, 2017—Do you know a person or company that is making a difference in the fight against rare diseases? Submit a nomination for the 2018 Rare Impact Awards by January 12: rarediseases.org/rare-impact-awards.
The Rare Impact Awards celebrates efforts to help the 30 million Americans with rare diseases who, by the very nature of their… Read More
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).
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