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Archives for: November 1st, 2022

Highlights from the 2022 NORD Breakthrough Summit

Written by Rohan Narayanan on November 1, 2022
Three people stand in front of the NORD logo - Peter Saltonstall, Robert Califf, and Pam Gavin

Last month, more than 830 enthusiastic attendees gathered in-person (and many more virtually) for the 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit to address and take action on the opportunities and challenges facing the rare disease community. Here are a few highlights:

FDA Commissioner Presents Keynote Address

FDA Commissioner Robert… Read More

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

NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics

Written by Rohan Narayanan on August 18, 2022

NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection

WASHINGTON, DC, August 18, 2022 – The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year,… Read More

Far From “Normal”: Brenda’s Rare Disease Story

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