Survey to Capture Diverse Perspectives
NORD and the Rare Disease Diversity Coalition form a partnership to shed light on access for underrepresented patients.
Planning for the Busy Holiday Season
For people who live with rare and chronic illness, the holiday whirlwind sometimes calls for “plan B.”
Meaningful Gift Guide 2022
It’s time for holiday shopping! We recommend books, jewelry and other stocking stuffers to help spread the word about rare di…
Inviting Journalists to Cover Rare Diseases
The National Press Foundation wants to raise awareness among reporters who can bring needed attention to patient stories, new…
New Podcast Episodes About Gene And Cell Therapies
In episode 5, hear from Yann Le Cam, leader of Europe’s rare disease community, EURORDIS. In episode 6, experts explore the p…
Book Excerpt: When Children Feel Pain
How can parents dealing with their own chronic pain teach children to manage pain in a healthy way? The authors of a just-pub…
Prioritizing Sleep and Rest When Others Don't
Get advice for declining invitations and claiming the time you need to refresh and recharge.
NORD's 2022 Breakthrough Summit
Back in-person, the annual conference left a lasting impact on the rare community.
Chronic Illness Made Visible
A book on “invisible” illnesses has been nominated for a major award in the U.S., shining a light on how these conditions are…
Mental Health and Rare Diseases
On World Mental Health Day, we look at a new study from the United Kingdom that queried more than 1,000 rare disease patients…
For Patients, Plasma Donors Are P.A.L.S.
Donors do the amazing by helping create life-saving medicines for patients. A program from CSL Plasma helps connect the two.