Published June 2, 2020 by NORD
What is a registry and why are they so important to the rare disease community? Together, NORD and the Critical Path Institute (C-Path) created this video to explain the value …
Continue reading “New video from NORD and C-Path addresses the question: “What is a Registry?””
Read morePublished May 22, 2020 by NORD
At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation Emile most frequently checks his… Facebook account Emile advocates for those living with… A rare syndrome …
Continue reading “Head of the Herd: Emile Najm, KAT6A Foundation”
Read morePublished May 21, 2020 by NORD
Washington, DC, May 21, 2020—The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in …
Read morePublished May 19, 2020 by NORD
Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational …
Continue reading “NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research”
Read morePublished May 13, 2020 by NORD
NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. …
Read morePublished May 12, 2020 by NORD
Washington, DC, May 12, 2020— United with more than 25 million Americans living with rare diseases, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Premium & Medical …
Read morePublished May 7, 2020 by NORD
NORD’s recently released COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. 772 participants responded to the survey conducted by NORD’s research team …
Read morePublished May 5, 2020 by NORD
Washington, DC, May 5, 2020–Today, the National Organization for Rare Disorders (NORD®) released the findings of its recent survey on the critical issues and concerns the rare disease community is facing …
Read morePublished April 28, 2020 by NORD
“…As we pull into the hospital, she starts screaming that she doesn’t want to be there, and she wants to be home… No matter how much her doctors want to …
Read morePublished April 24, 2020 by NORD
Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and …
Continue reading “NORD Joins 400+ Groups to Prevent Discrimination During COVID-19 Triaging”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.