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… Read More
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download… Read More
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum promises to be an unforgettable weekend for patients, families, medical professionals and students. Download the agenda now and register by April 26 to take advantage of… Read More
Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of the rare disease community at this year’s Rare Impact Awards on June 22.
This June in Houston, Texas, the 2019 Living Rare, Living Stronger | NORD Patient & Family Forum will bring the rare community together with physicians, medical students and allied health
professionals for a program of learning, sharing and connection… Read More
