Published January 17, 2020 by NORD
At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation Leah advocates for those living with… SCN2A Disorders Leah is located …
Continue reading “Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation”
Read morePublished January 16, 2020 by NORD
Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease …
Continue reading “NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!”
Read morePublished January 7, 2020 by NORD
At NORD, we know that patient-powered initiatives change the world.
Read morePublished December 20, 2019 by NORD
Washington, DC, December 20, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, announces the appointment of two new …
Continue reading “NORD Welcomes Two New Members to Board of Directors”
Read morePublished December 9, 2019 by NORD
On Saturday, December 7, the Washington Post‘s Erin Blakemore profiled NORD’s Rare Disease Database and website, rarediseases.org, in the paper’s Health column. The following is an excerpt from the article: …
Read morePublished December 3, 2019 by NORD
By Debbie Drell, Director of Membership My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she …
Continue reading “NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development”
Read morePublished December 2, 2019 by NORD
Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and …
Continue reading “What Questions Would You Ask About Gene Editing?”
Read morePublished November 29, 2019 by NORD
Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began …
Continue reading “A First Time for Everything: Marissa’s Running for Rare Story”
Read morePublished November 22, 2019 by NORD
One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award. “I was able to meet and have dinner …
Continue reading “Rare Caregivers Corner: Debra’s Story”
Read morePublished November 20, 2019 by NORD
This week, HealthDay published an article entitled “Don’t Give Up: Parents’ Intuition Spots a Rare Illness Before Doctors Do” on patients persistently advocating for their sick child although doctors were …
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