Written by Maia Craig on February 3, 2022
Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family… Read More
Written by Maia Craig on January 24, 2022
Being a family member or friend of someone with a rare disease can be a challenging experience. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope and share experiences for… Read More
Written by Valaree DonFrancesco on April 28, 2021
Join over 1,000 rare disease stakeholders virtually at the World Orphan Drug Congress on Wednesday, April 28, 2021. The conference has over 50 speakers, including NORD’s President and CEO Peter L. Saltonstall, tackling topics on advanced therapies, clinical development, rare disease advocacy, and more.
Register for your free pass today: Read More
Written by Lisa Sencen on August 1, 2018
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More
Written by Lisa Sencen on March 29, 2018
After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.
For example, we had greatly… Read More