National Organization for Rare Disorders, Inc. (NORD)

06/18/2026

Registration is now open for the NORD® Rare Diseases and Orphan Products Breakthrough Summit® taking place October 25-27 in Washington, D.C.!

Join hundreds of rare disease patient advocacy organizations, industry leaders, policymakers, and experts at the forefront of clinical research and orphan drug development for three days of learning, collaboration, and bold thinking.

Now in its 16th year, the NORD Breakthrough Summit is where ideas become action. Register today and save with the Early Bird rate: https://bit.ly/4winRh9

06/17/2026

Explore this hematology oncology program now available on demand on Medlive ▶️

This expert discussion examines the challenges of diagnosing and treating peripheral T-cell lymphoma (PTCL) Watch it on demand now: https://bit.ly/4wSBTH4

Doctors from WashU Medicine, a NORD Rare Disease Center of Excellence, and City of Hope will focus on avoiding the “NOS trap” and applying evolving evidence to patient care.

06/17/2026

Today is National Mascot Day, and Nordy is celebrating! 🦓

Do you know why Nordy the Zebra is the mascot for NORD, the National Organization for Rare Disorders?

It’s because when doctors “hear hoofbeats” in the form of symptoms, it might indicate a horse, but 1 in 10 Americans has a condition that is more rare—we are the zebras. You might not know from looking at us, so we show our stripes to raise awareness for our rare diseases, of which there are more than 10,000 different types and less than 5% have approved treatments.

Shout out to all our fellow mascots today! Learn more at rarediseases.org and catch Nordy at an event near you.

Shout out to all our fellow mascots today!

06/16/2026

You can make a difference for the Paroxysmal Nocturnal Hemoglobinuria community! The Global Patient Registry is now seeking participants interested in moving research forward - powered by patients. Sign-up now at pnh.iamrare.org

06/16/2026

NORD's is here! 🎮

Creators are teaming up with NORD all summer to turn streams into impact through gaming, community and fundraising. Join us as they use their platforms to support the rare disease community and help advance NORD’s mission.

Stay tuned for our first stream with Legally Blind No Limits on June 25 at 7 p.m. ET! Watch live on their YouTube channel: https://www.youtube.com/

06/15/2026

Last week in Boston at the World Orphan Drugs Congress, NORD and leaders from our Rare Disease Centers of Excellence highlighted how our network of 150+ medical centers around the country are addressing the unmet needs of individuals with rare diseases and their caregivers.

Dr. Brett Bordini of the Rare Disease Center of Excellence at Medical College of Wisconsin discussed how the network developed resources to help pediatricians identify and diagnose rare diseases in children and equip parents with information to recognize potential indicators of a rare disease and understand when and how to seek specialized care and diagnostic evaluation for their child.

Meanwhile, Dr. Samuel Finlayson of OpenEvidence and the Rare Disease Center of Excellence at UW Medicine shared how the partnership model between OpenEvidence and NORD combines AI with the expert knowledge of NORD’s network to create current, accessible resources for physicians and patients.

Thank you to Marybeth McAfee, VP of Community & Medical Affairs, for representing NORD, and to our fellow panelists for sharing how collaboration and practical resources can strengthen rare disease care.

06/15/2026

NORD is proud to support the Cushing’s syndrome community through our RareCare Patient Assistance Program. Qualified patients may receive financial assistance for:
• Health insurance premiums & deductibles
• Prescription expenses
• Cushing’s specialist consultations
• Travel related to care and treatment

To learn more and apply, visit https://bit.ly/4oCCg56, call 855-864-4018, or email [email protected].

06/12/2026

Summer is an important time to connect with elected officials while they are back in their home districts.

Join us on Wednesday, June 17, at 1 pm ET for “Effective Lawmaker Engagement for Rare Disease Advocates.” Learn how to build stronger relationships with state lawmakers and members of Congress and feel more prepared to advocate for rare disease priorities.

RSVP today: https://bit.ly/431zfRL

06/12/2026

If you are a enrollee age 19-64 enrolled in Medicaid expansion coverage and are not pregnant or enrolled in Medicare, the most important thing you can do right now is prepare. Start by updating your contact information and following the steps listed under #5 in this explainer from KFF Health News, which quotes NORD state policy expert Carolyn Sheridan.

Read more about the new requirements:

The Trump administration has laid out what millions of Americans on Medicaid must do to prove they’re working or completing other activities. Health policy researchers and consumer advocates say there are some important takeaways.

06/11/2026

Advancing care starts with understanding.

For spinal CSF leak, gaps in awareness, delayed diagnosis, and limited data have long made it difficult to fully understand how this condition presents, how care is accessed, and what outcomes look like over time.

The Spinal CSF Leak Foundation's ileak registry℠ was created to help address those gaps by collecting patient-reported data directly from people living with spinal CSF leak.

Learn more and enroll: https://ileak.iamrare.org/

Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through our IAMRARE® platform, the ileak registry℠ is an international, patient-driven research registry that allows people with spinal CSF leak to share their experiences directly with researchers. The ileak registry℠ is open to individuals with either suspected or confirmed spinal CSF leak.