Published July 28, 2015 by NORD
Howdy from Houston, The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways …
Continue reading “Rare Action™ Road Tour, Houston, TX”
Read morePublished July 28, 2015 by NORD
Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules …
Continue reading “Rare Action™ Road Tour, Tallahassee, FL”
Read morePublished July 27, 2015 by NORD
LGDA, Lymphangiomatosis & Gorham’s Disease Alliance works hard to support people affected by lymphatic anomalies. Read more about this spotlight member:
Read morePublished July 23, 2015 by NORD
Greetings from Atlanta, Georgia. I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force …
Continue reading “Rare Action™ Road Tour, Atlanta, GA”
Read morePublished June 19, 2015 by NORD
What can’t duct tape fix? Russ Illes, author of Duct Tape Won’t Fix This: A Father’s Perspective on Raising a Chronically Ill Child (Riverhaven Books) says men love to use …
Continue reading “Q & A with Russ Illes, Author of Duct Tape Won’t Fix This”
Read morePublished June 17, 2015 by NORD
Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” …
Continue reading “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases”
Read morePublished May 28, 2015 by NORD
Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …
Read morePublished May 21, 2015 by NORD
NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …
Continue reading “NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative”
Read morePublished May 13, 2015 by NORD
Save the Date for NORD’s Annual breakthrough summit.
Read morePublished April 10, 2015 by NORD
Lauren Hill, a remarkable 19-year-old athlete passed away due to a rare form of brain cancer called DIPG.
Read more
Every day matters for patients, researchers, and families who rely on NORD's trusted information.
We can’t keep these resources free and growing without your help.
Please donate today — and power the future of rare disease progress.
Whether you’re a patient, researcher, student, or advocate — we’re here for you.
If you’ve found NORD’s resources helpful, please consider donating.
Your support keeps this information free, updated, and available for everyone who needs it.