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March 8, 2019

TOPIC: Featured News, Press Releases, Research

NORD IAMRARE APS Type 1 Patient Registry Launched

Posted by Christina Jensen

Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations… Read More

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March 6, 2019

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

Rare Disease Day 2019 Notes and Successes

Posted by Christina Jensen

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

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March 1, 2019

TOPIC: Featured News, Patient Stories, Rare Disease Day

Misconceptions about living with a rare disease – the community weighs in

Posted by Laura Mullen

A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for #RareDiseaseDay.

 

On World Rare Disease Day, groups and… Read More

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February 27, 2019

TOPIC: Rare Disease Day

Astellas Recognizes Rare Disease Day

Posted by Christina Jensen

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 26, 2019

TOPIC: Advocacy, Get Involved, Patient Stories, Rare Disease Day

Ben’s Story in Honor of Rare Disease Day

Posted by Christina Jensen

The following story was submitted by Leah Schust in honor of Rare Disease Day. In this story, Leah shares her family’s journey of searching for and receiving a diagnosis for their son, Ben, of  SCN2A Disorder.

Share your story for Rare Disease Day here.

Benjamin, known to all who love him as Ben, is an adorable… Read More

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Alone we are rare. Together we are strong.®