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Archives for: September 26th, 2017

Protecting Your Healthcare Coverage

Written by Christina Jensen on September 26, 2017
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The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients… Read More

Advance the Dialogue at the NORD Rare Summit

Written by Christina Jensen on August 15, 2017
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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… Read More

NORD/ABC Rare Disease Day Tweetchat

Written by Christina Jensen on March 1, 2016

NORD will co-sponsor a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. NORD will be live tweeting with Dr. Besser from@rarediseases and @RareDayUS (a Twitter feed dedicated to Rare Disease Day). Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Educator, will be providing… Read More

Join NORD and ABC News for a Rare Disease Day Tweetchat on March 1

Written by Christina Jensen on January 21, 2016

Join us for a nationwide conversation about rare diseases on:

Tuesday, March 1, 2016
1:00 – 2:00 p.m. EST

In celebration of Rare Disease Day®, NORD will co-sponsor a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News… Read More

Join the Running for Rare Team!

Written by Christina Jensen on January 18, 2016
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For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program.

The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community… Read More