Featured News Archives - NORD (National Organization for Rare Disorders)

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 Christina Jensen

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

Tags: #RareDiseaseDay, #ShowYourStripes, February 28, February 28th, NORD, Rare Disease Day, Rare Disease Day U.S. Sponsor, Show Your Stripes, Show Your Stripes Challenge, zebra

January 9, 2019

TOPIC: Featured News, Get Involved, Patients & Members

NORD IAMRARE KAT6A Patient Registry Launched

Posted at January 1, 2019 09:38 am by Christina Jensen

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, KAT6A, officially launched their patient registry, KAT6A Patient 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 and experts in the field. We are pleased to share the press release that was… Read More

Tags: IAMRARE, KAT6A Patient Registry, natural history studies, patient registry

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

Tags: #RareDiseaseDay, #ShowYourStripes, Facebook, NORD, Rare Disease Day, Rare Disease Day 2019, Show Your Stripes, Show Your Stripes Challenge, social media

January 3, 2019

TOPIC: Featured News, Press Releases

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Posted at January 1, 2019 09:51 am by Laura Mullen

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as a valuable resource for patients, families and caregivers in need of easy-to-understand information about rare diseases. The enhancements to the database and to the NORD website, which… Read More

Tags: Anthem, Anthem Foundation, GARD, Genetic and Rare Diseases Information Center, National Institutes of Health, National Organization for Rare Disorders, NIH, NORD, Rare Disease Database, Rare Disease Reports, Sika Dunyoh

December 20, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Rare Disease Day, Sticky Posts for Homepage

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

Tags: Events, Rare Disease Day, Rare Disease Day 2019. Rare Action Network, RDD

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January 9, 2019

NORD IAMRARE KAT6A Patient Registry Launched

Posted at January 1, 2019 09:38 am by Christina Jensen

January 3, 2019

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Posted at January 1, 2019 09:51 am by Laura Mullen

December 20, 2018

Rare Disease Day 2019 is Only 10 Weeks Away!

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

Topics

Alone we are rare. Together we are strong.®