Published June 27, 2019 by NORD
We would like to extend our sincerest thanks to all those who joined us during the Living Rare, Living Stronger NORD Patient & Family Forum, June 21-23 in Houston. Over …
Continue reading “NORD’s 2019 Living Rare, Living Stronger Weekend Highlights”
Read morePublished June 17, 2019 by NORD
NORD’s Living Rare, Living Stronger Patient & Family Forum is coming us this weekend on June 21-23 in Houston, TX. For those not joining us in-person, please join us online! …
Continue reading “Catch Living Rare Forum Plenaries and The Rare Impact Awards on Facebook Live!”
Read morePublished May 21, 2019 by NORD
This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every …
Continue reading “Exciting Rare Impact Awards Announcements”
Read morePublished May 20, 2019 by NORD
Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, …
Continue reading “Deborah Skolaski: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
Living through a lengthy diagnostic odyssey is unfortunately very common for rare disease patients. Madison “Maddie” Shaw’s journey to diagnosis took place over an intense and frustrating two and a …
Continue reading “Madison Shaw: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
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 …
Continue reading “Dr. Debra Regier: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
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 …
Continue reading “Dr. Wendy Chung: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
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 …
Continue reading “Donna Appell, R.N.: 2019 Rare Impact Award Honoree”
Read morePublished April 26, 2019 by NORD
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of …
Continue reading “NORD IAMRARE DHPS Patient Registry Launched”
Read morePublished April 18, 2019 by NORD
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 …
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