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Archives for: September 30th, 2022

Honoring Steven Matthews This Rare Cancer Day

Written by Rohan Narayanan on September 30, 2022

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.

The Chondrosarcoma Foundation is sharing the story of firefighter Steven Mathews in… Read More

Unanswered Questions: Leah’s Rare Cancer Story

Written by Julie Ostroff on September 16, 2022

My life has been completely altered by rare diseases, specifically rare cancer. During my pregnancy with my 2nd child, I had stage IV sarcoma. Doctors were unable to tell me the effect it had on my baby or how long I had to live. I had so many unanswered… Read More

NORD Statement on Passage of the Inflation Reduction Act

Written by Rohan Narayanan on August 12, 2022

Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following statement:  

“The Inflation Reduction Act is a significant step forward in helping ensure that individuals… Read More

A Conversation on Drug Development for Rare Diseases

Written by Mary Dunkle on July 7, 2022

Explore the five steps in drug development and discover new opportunities to get involved

More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today there are more opportunities than ever before for patients, caregivers and patient organizations to play a key role in advancing R&D… Read More