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May 20, 2019

TOPIC: Advocacy, Featured News, Get Involved

Dr. Debra Regier: 2019 Rare Impact Award Honoree

Posted by Christina Jensen

Debra Regier, M.D., Ph.D. is the Director of Genetic and Genomic Education at Washington, DC’s Children’s National Medical Center, attending physician in genetics and metabolism and Primary Investigator (PI) for the Rare Disease Clinical Research Scholars Program. A graduate of the University of Utah School of Medicine in 2009 as Primary Investigator, Dr. Regier now… Read More

May 20, 2019

TOPIC: Advocacy, Featured News, Get Involved

Dr. Wendy Chung: 2019 Rare Impact Award Honoree

Posted by Christina Jensen

As a clinical and molecular geneticist, Wendy Chung, M.D., Ph.D. has been working with patients with rare genetic diseases and their families for the last 20 years. She is the Kennedy Family Professor of Pediatrics and Medicine at Columbia University Irving Medical Center and leader of the Chung Lab at Columbia University. Her focus has been on… Read More

May 20, 2019

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members

Donna Appell, R.N.: 2019 Rare Impact Award Honoree

Posted by Christina Jensen

When Donna Appell’s one-year-old daughter Ashley exhibited frequent and unexplainable bruising, Donna turned to her toddler’s pediatrician for answers. She was told that the bruising was “easier to see” because of Ashley’s albinism. After leaving the pediatrician feeling patronized, Donna sought answers herself, learned about a rare bleeding disorder associated with albinism and soon met with a… Read More

May 10, 2019

TOPIC: Featured News, Patients & Members, Press Releases

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Posted by Laura Mullen

Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards… Read More

May 7, 2019

TOPIC: Advocacy, Featured News, Industry, Patients & Members, Press Releases

NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

Posted by Christina Jensen

Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.

People living with rare diseases must be able to afford the therapies that… Read More