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January 16, 2020

TOPIC: Press Releases, Featured News, Advocacy, Rare Disease Day

NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!

Posted at January 1, 2020 10:21 am by Valaree DonFrancesco

Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes. NORD is imploring the world at large to show… Read More

January 13, 2020

TOPIC: Sticky Posts for Homepage, Rare Disease Day

Join NORD on Rare Disease Day

Posted at January 1, 2020 12:14 pm by Sean Roberts

Rare Disease Day: Mission 2020 will be a day of family fun and intrigue at the International Spy Museum, one of DC’s newest family-friendly, accessible-to-all museums. NORD will be hosting activities and lunch for folks living with rare diseases, their families and other rare community supporters! Everyone is welcome.

What will the mission at the International Spy Museum entail?

Just… Read More

March 6, 2019

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

Rare Disease Day 2019 Notes and Successes

Posted at March 3, 2019 04:38 pm by Lisa Sencen

This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud to say that Rare Disease Day 2019 was a… Read More

February 27, 2019

TOPIC: Rare Disease Day

Astellas Recognizes Rare Disease Day

Posted at February 2, 2019 08:49 pm by Lisa Sencen

Astellas is proud to support Rare Disease Day and is actively committed to raising awareness about rare diseases and their impact on patients, their families and caregivers.

Astellas’ dedication to patients drives both its work to develop new therapies for diseases with unmet patient needs and its desire to support advocacy and education. On Rare Disease Day… Read More

February 25, 2019

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

Connor’s Story in Honor of Rare Disease Day

Posted at February 2, 2019 01:06 pm by Lisa Sencen

The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for their son, Connor, of Snyder-Robinson Syndrome (SRS). 

Share your story for Rare Disease Day here.

Our son Connor was diagnosed with Snyder-Robinson Syndrome (SRS) in… Read More