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January 20, 2020

TOPIC: Featured News, Patients & Members

NORD Reaches 300 Members!

Posted by Laura Mullen

At NORD we are extremely proud to welcome our 300th member organization! Our Odyssey is a national nonprofit supporting chronic and rare disease young adult patients by providing social and emotional support in the hope of improving their quality of life. Not only is Our Odyssey the 300Read More

January 17, 2020

TOPIC: Advocacy, Featured News, Patients & Members

Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Posted by Laura Mullen

At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation 

Leah advocates for those living with… SCN2A Disorders 

Leah is located in… Gettysburg, PA 

How Leah got here… 

My son had his first seizure a few days after his first birthday. Our… Read More

January 16, 2020

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

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

Posted 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 7, 2020

TOPIC: Featured News, Patients & Members

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted by Laura Mullen

At NORD, our priority is advancing rare disease research and innovation by working together to overcome critical challenges. The input of patients and caregivers plays an integral role in getting beyond obstacles and moving towards a brighter future for the rare disease community.

In… Read More