Published April 5, 2024 by NORD
By Eric W. “Please don’t forget about me” were some of the last words a leprosy patient told me during my most recent trip to Ecuador. I was in my …
Read morePublished March 20, 2024 by NORD
By Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) How should lab developed diagnostic tests (LDTs) be regulated? As the House Energy …
Read morePublished March 6, 2024 by NORD
NORD’s State Report Card grades states on policies that benefit or jeopardize health care coverage, access, and affordability for people living with rare diseases The National Organization for Rare Disorders …
Read morePublished February 28, 2024 by NORD
By Heidi Ross and Karin Hoelzer What needs to be done to better support rare disease patients, and what is the value of the prescription drugs that treat rare diseases? …
Read morePublished January 25, 2024 by NORD
Jonathan Kowalske, rare disease Dad and co-founder of Milwaukee’s Component Brewing Company, has created a national campaign in partnership with the National Organization for Rare Disorders (NORD) to raise awareness and …
Continue reading “Guest Blog: Why I Created Zebra Hop”
Read morePublished November 14, 2023 by NORD
The holiday season is almost here! To bring seasonal cheer and remind one another that no one in the rare community fights alone, NORD will be creating and delivering care …
Continue reading “Help NORD Spread Cheer This Holiday Season! “
Read morePublished October 28, 2023 by NORD
Celebrating internal medicine physicians on National Internal Medicine Day We continue to be inspired by our advocates and volunteers who drive recognition of rare disease as an urgent public health …
Continue reading “Volunteer Spotlight: Dr. Kristen Kingzett”
Read morePublished August 19, 2023 by NORD
This year, NORD Advocate Judy A. testified before the Hawaii state legislature, leading Hawaii to pass a law making it easier for residents with rare diseases to access out-of-state physicians …
Read morePublished July 26, 2023 by NORD
Delaware is the 27th state to establish a Rare Disease Advisory Council to raise awareness and inform state health policies. July 26, 2023, Dover, DE – Today, patients and families in …
Continue reading “Delaware Enacts Law to Address Needs of Rare Disease Patients and Families”
Read morePublished June 30, 2023 by NORD
Today, the Centers for Medicare and Medicaid Services (CMS) finalized a key component of the Inflation Reduction Act’s Medicare Drug Price Negotiation Program (MDPNP). Unfortunately, today’s guidance threatens vital innovation …
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