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January 8, 2019

TOPIC: Advocacy, Featured News, Rare Disease Day

Rare Disease Advocates Share Ideas for How to Mark Rare Disease Day 2019

Posted at January 1, 2019 12:40 pm by Christina Jensen

Each year on the last day of February, the rare disease community comes together on Rare Disease Day to raise awareness for millions of people who are impacted by rare diseases.

This year’s Rare Disease Day is just 51 days away! As the Official U.S. sponsor, NORD rallies rare disease advocates, patients and… Read More

December 20, 2018

TOPIC: Advocacy

NORD Issues Statement on FDA’s Impending Expanded Access Call Center

Posted at December 12, 2018 03:33 pm by Christina Jensen

Washington, D.C., December 20, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on FDA’s impending expanded access call center:

“Late last week, the Food and Drug Administration (FDA) announced it will soon be launching a call center specifically for patients and… Read More

December 20, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Rare Disease Day

Rare Disease Day 2019 is Only 10 Weeks Away!

Posted at December 12, 2018 09:35 am by Christina Jensen

Every year, individuals around the globe come together for one special day to recognize and raise awareness for rare diseases. This day, Rare Disease Day® (RDD), takes place on the last day of February each year. The next RDD will fall on February 28, 2019.

Together, we can raise the profile of rare diseases and the issues that our community… Read More

November 19, 2018

TOPIC: Advocacy, Featured News, Get Involved

Orphan Drug Act Resolution Introduced in Congress

Posted at November 11, 2018 10:22 am by Christina Jensen

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies… Read More

November 9, 2018

TOPIC: Advocacy, Get Involved, Medical

Featured Student: Jennifer Shoskes

Posted at November 11, 2018 12:50 pm by Christina Jensen

NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community.
For more information on NORD’s student programs, click… Read More