Published July 11, 2019 by NORD
NORD and the Foundation for Rare Blood Diseases (SZB) invite you to register for an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, …
Read morePublished July 8, 2019 by NORD
NORD’s Educational Initiatives team spoke with Alexander Pham, a Massachusetts College of Pharmacy and Health Sciences student and NORD Students for Rare Chapter Leader. In this interview, Alexander talks about his …
Continue reading “Featured Student: Alexander Pham”
Read morePublished July 2, 2019 by NORD
The time is now…register today!
Read morePublished July 1, 2019 by NORD
NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …
Continue reading “Help for rare disease patients impacted by Hurricane Dorian”
Read morePublished 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
Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State Representative for …
Continue reading “The Honorable Sarah Davis: 2019 Rare Impact Award Honoree”
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”
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