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February 1, 2019

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day

Brazeau Family Story for Rare Disease Day

Posted at February 2, 2019 09:34 am by Lisa Sencen

The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his  family’s journey of receiving a diagnosis for their son, Archer, of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Read on for a harrowing account on hearing about a life-changing diagnosis, and how the Brazeau family was able… Read More

January 16, 2019

TOPIC: Advocacy, Events, Featured News, Patients & Members, Press Releases, Rare Disease Day

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Posted at January 1, 2019 10:45 am by Lisa Sencen

Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for people to literally and figuratively “show their stripes” in… Read More

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 Lisa Sencen

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 Lisa Sencen

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 Lisa Sencen

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