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November 2019

NORD Webinar – Understanding the Gene Therapy Process and Aftercare

November 20 @ 2:00 pm - 3:00 pm

During this webinar, clinicians who deliver potentially life-changing gene therapies will explain the gene therapy process and aftercare. Don’t miss this exciting opportunity to hear Dr. Jerry Mendell, Neurologist and Principal Investigator for the Center for Gene Therapy at Nationwide Children’s Hospital and Dr. Barry Byrne, Associate Chair of Pediatrics and Director of the University of Florida Powell Center and Child Health Research Institute. They will explain how patients are identified as candidates for gene therapy, who may be on…

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February 2020

Rare Disease Day 2020

February 29, 2020

Each year on the last day of February, the rare disease community comes together to raise awareness for the 25-30 million Americans impacted by rare diseases. Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. It’s never too early to get involved! The National Organization for Rare Disorders (NORD) is…

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May 2020

Living Rare, Living Stronger: NORD Patient and Family Forum 2020

May 14, 2020 - May 16, 2020

NORD CEO Peter L. Saltonstall has some big news to share on the city we are taking the Living Rare, Living Stronger: NORD Patient and Family Forum to in May 2020, plus the amazing venue for the Rare Impact Awards! Get ready to rock!   Check our site for last year's highlights and upcoming details.

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