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Archives for: April 8th, 2021

NORD Expands Gene Therapy Offerings Through New Online Resources

Written by Lisa Sencen on April 8, 2021

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health… Read More

Valencia Bella’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 26, 2021

Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs so tight that it caused extensive nerve damage and… Read More

NORD Launches Natural History Study for Undiagnosed Rare Diseases

Written by Valaree DonFrancesco on February 28, 2020

Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More

Alone we are rare. Together we are strong.®