January 16, 2020
TOPIC: Advocacy, Featured News, Press Releases, Rare Disease Day
Posted at January 1, 2020 10:21 am by Laura Mullen
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: Rare Disease Day, Sticky Posts for Homepage
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: Events, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day
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
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: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, 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