Published October 29, 2015 by NORD
“We are proud to support the efforts of important organizations like NORD, and to have an employee base so willing to give to the communities and charities that matter to …
Read morePublished October 28, 2015 by NORD
Sophia Hanson is a college student and has the rare disease, Lymphedema. She is writing for NORD about the balancing act of going to college, moving away from home, and …
Continue reading “Taking on NYC and a Rare Disease: An Introduction”
Read morePublished October 26, 2015 by NORD
The Caring for Carcinoid Foundation has changed its name to Neuroendocrine Tumor Research Foundation.
Read morePublished October 22, 2015 by NORD
Announcing NORD’s State Progress Report, a Roadmap for State Improvement.
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 September 24, 2015 by NORD
“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.” At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks …
Continue reading “Jill Zeigler’s Story: Life with aHUS”
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