NORD Releases First-Ever State Progress Report for Rare Diseases
Announcing NORD’s State Progress Report, a Roadmap for State Improvement.
Read morePublished October 22, 2015 by NORD
Announcing NORD’s State Progress Report, a Roadmap for State Improvement.
Read morePublished October 19, 2015 by NORD
The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit committed to the identification, treatment and cure of rare diseases, announces the appointment of two new hires: Catherine Blansfield, …
Continue reading “NORD Announces New VP of Patient Services and General Counsel”
Read morePublished October 14, 2015 by NORD
On July 27, 2011 the Cruz family welcomed a gorgeous baby boy, Liam, to their lives. Weighing 7lbs and 19 inches long, he was born at Greenwich Hospital in Greenwich, …
Continue reading “Liam Cruz’ Diagnostic Journey”
Read morePublished October 12, 2015 by NORD
TargetCancer Foundation provides up to date and breaking information about treatment options beyond the standard of care for rare cancer patients.
Read morePublished October 12, 2015 by NORD
Date: February 29, 2016 Global Theme: Patient Voice Global Slogan: Join us in making the voice of rare diseases heard By definition, each rare disease affects a small segment of …
Continue reading “Raise Your Voice: Rare Disease Day 2016 is Coming”
Read morePublished October 5, 2015 by NORD
Member Spotlight: The Narcolepsy Network is a national voluntary organization that was formed to serve the needs of people with narcolepsy.
Read morePublished October 5, 2015 by NORD
While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and …
Continue reading “The Undiagnosed: Orphans of the Rare Disease Community”
Read morePublished October 1, 2015 by NORD
“Although this horrible rare disease has taken a lot of time away from normal life, my family and I are blessed for every breath, every smile, and every rainy day! …
Continue reading “From Mother to Daughter”
Read morePublished September 30, 2015 by NORD
“We are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.” …
Read morePublished September 29, 2015 by NORD
The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday’s approval of the Ensuring Access to Clinical Trials …
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