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November 28, 2017

TOPIC: Advocacy, Events, Press Releases

Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

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

October 31, 2017

TOPIC: Advocacy, Events

Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

Posted at October 10, 2017 10:04 am by Lisa Phelps

NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. 7.

The event will provide a platform for rare disease patient advocates and medical experts to suggest diseases for consideration for SSA’s Compassionate Allowances list.

Compassionate Allowances is a way… Read More

October 13, 2017

TOPIC: Events, Press Releases, Sticky Posts for Homepage

Nominations Open!

Posted at October 10, 2017 12:17 pm by Jennifer Huron
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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

August 31, 2017

TOPIC: Events, Featured News, Industry, Medical, Patients & Members, Research

FDA Announces First Gene Therapy in U.S.

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: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Advance the Dialogue at the NORD Rare Summit

Posted at August 8, 2017 09:49 am by Christina Jensen
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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