Written by Rohan Narayanan on December 27, 2021
I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in his private optometry practice for 20 years and help with the daily care of our 11-year-old grandson. My life is full, happy, active and busy – as “normal” as I may… Read More
Written by Jennifer Huron on December 20, 2021
In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious goals, including to help to shorten the time to diagnosis, to inform and establish treatment protocols where they do… Read More
Written by Rohan Narayanan on September 29, 2021
Washington, DC, September 29, 2021— Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals… Read More
Written by Jennifer Huron on April 28, 2016
WASHINGTON, D.C./BOSTON ― April 28, 2016 ―The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage its innovative platform to monitor real-world… Read More
Written by Lisa Sencen on October 12, 2015
TargetCancer Foundation promotes the development of lifesaving treatment protocols for rare cancers. TargetCancer Foundation directly supports initiatives at the forefront of cancer treatment by funding innovative research, fostering collaborations, and raising awareness among scientists, clinicians, and patients. Executive Director for TargetCancer Foundation, Jim Palma, will be speaking at the NORD… Read More
