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Published June 1, 2021 by NORD
Published May 27, 2021 by NORD
Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced …
Continue reading “NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer”
Read morePublished May 26, 2021 by NORD
On the show today, Matthew Zachary welcomes Jo-Ann D’Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is …
Continue reading “Rare Voices of NORD: Jo-Ann D’Angelo”
Read morePublished May 18, 2021 by NORD
Washington, DC, May 18, 2021—The National Organization for Rare Disorders (NORD®) announced that during a recent Board of Directors meeting, Kay Holcombe was elected as Chair and Dennis Jackman joined …
Continue reading “NORD Announces New Board Chair and New Member of its Board of Directors”
Read morePublished May 12, 2021 by NORD
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and …
Continue reading “Jeff Goldstein and NORD’s RareLaunch Research Ready”
Read morePublished May 6, 2021 by NORD
Bethesda, MD, May 6, 2021—The Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD)® today launched the largest-ever study to research Paroxysmal Nocturnal Hemoglobinuria …
Read morePublished April 29, 2021 by NORD
The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is …
Continue reading “New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey”
Read morePublished April 28, 2021 by NORD
On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer …
Continue reading “Adolescent and Young Adult Rare Disease: Seth Rotberg’s Story”
Read morePublished April 22, 2021 by NORD
Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD®) have announced a partnership to develop global data standards for rare …
Continue reading “CDISC and NORD Partner to Develop Data Standards for Rare Diseases”
Read morePublished April 14, 2021 by NORD
On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, …
Continue reading “Rare Disease Research: What’s All This Then?”
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