Published February 4, 2020 by NORD
This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started to experience the impact when I …
Continue reading “Zuhriah’s Story in Honor of Rare Disease Day”
Read morePublished February 4, 2020 by NORD
This story is about my husband, Tucker. In 2004, we began to notice that he wasn’t able to play guitar like he used to, as well as that he was …
Continue reading “Tucker’s Story in Honor of Rare Disease Day”
Read morePublished January 31, 2020 by NORD
At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation Get in touch with Mike on… Facebook and Twitter Mike advocates for those living with… …
Continue reading “Head of the Herd: Mike Morris, TANGO2 Research Foundation”
Read morePublished January 24, 2020 by NORD
NORD is pleased to launch an addition to our robust rare disease programs providing financial support to the rare disease community. NORD’s new Neuromyelitis Optica Spectrum Disorder (NMOSD) Program provides …
Read morePublished January 23, 2020 by NORD
Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, …
Read morePublished January 20, 2020 by NORD
At NORD we are extremely proud to welcome our 300th member organization! Our Odyssey is a national nonprofit supporting chronic and rare disease young adult patients by providing social and …
Continue reading “NORD Reaches 300 Members!”
Read morePublished 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 7, 2020 by NORD
At NORD, we know that patient-powered initiatives change the world.
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 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”
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