National Organization for Rare Disorders, Inc. (NORD)

09/10/2026

We are pleased to see these four FDA senior leadership appointments at such a critical time for people living with rare diseases. Stability, certainty and strong leadership are essential to advancing regulatory science.

Rare diseases are a significant public health issue affecting more than 30 million Americans, most of which have no approved therapy. NORD looks forward to working with our new leaders to advance innovation and ensure the needs of people living with rare diseases remain at the forefront of the FDA’s work.

09/08/2026

rare disease community — we’re coming to Fort Lauderdale! 🌴

Registration is now open for NORD's free Living Rare, Living Stronger event on Friday, Dec. 4, at the Broward Center for the Performing Arts.

This free event brings patients and caregivers together for a day of education, connection, and community building. Attendees will learn from experts, connect with others on similar journeys, discover local resources, and explore opportunities to get involved in advocacy.

Register today: https://livingrare.org/florida/

09/07/2026

Meet NORD’s 2026 team for the TCS New York City Marathon!🏃‍♀️

This November, our runners will take on 26.2 miles to raise funds and awareness for the rare disease community. But they won’t be running alone. Each runner is paired with a rare disease community partner, creating a connection that brings even more meaning to every mile.

Throughout the season, we’ll share their stories, training milestones, and journeys to the starting line.

Whether you’re running or cheering, support the 2026 Running for Rare team and their fundraising efforts: https://bit.ly/46IcZy0

09/04/2026

Registration is now open for NORD’s first virtual event entirely in Spanish! 🎉 https://bit.ly/4i6JPzG

Join us Saturday, Oct. 3, from noon to 2:30 p.m. ET on Zoom for a free event bringing Spanish-speaking rare disease patients, families, and caregivers together for education and community connection.

Attendees can expect expert-led information on genetics and navigating next steps after a rare disease diagnosis, along with opportunities to connect with other patients and families.

Programming will be in Spanish, with simultaneous live interpretation available in English.

Register today: https://bit.ly/4i6JPzG

Please share this with someone in your community who may benefit from this event.

09/03/2026

Over a decade ago, North Carolina made history as the first state in the nation to establish a Rare Disease Advisory Council (RDAC), giving more than 1 million North Carolinians living with a rare disease a voice in state government.

Now, applications are open through Sept. 8 for individuals interested in serving on the council beginning in 2027 and becoming part of that legacy. https://bit.ly/4x6eTU8

Patients, caregivers, patient advocacy organization leaders, and health care professionals involved in rare disease research, diagnosis, or treatment are encouraged to apply and help shape the future of rare disease support across the state.

Learn more and apply today: https://bit.ly/4x6eTU8

North Carolina Advisory Council on Rare Diseases The Rare Diseases Advisory Council (RDAC) was established in 2015 and transferred to and reconstituted within the North Carolina Department of Health and Human Services (NCDHHS) under Taylor’s Law (Session Law 2026-41) in 2026. The RDAC advises the ...

09/03/2026

September is Rare Blood Cancer Awareness Month, a time to raise awareness of rare blood cancers and help patients, families and health care professionals find trusted information and resources.

Essential thrombocythemia (ET) is a rare blood cancer diagnosed in about 1.5 people per 100,000 each year in the U.S. Understanding ET can help patients navigate a diagnosis, while greater awareness can support health care professionals in recognizing, diagnosing and caring for people with the condition.

NORD’s short, animated video, *Essential Thrombocythemia Explained: Causes, Diagnosis & Prognosis*, breaks down what causes ET, how it affects platelet production, how it is diagnosed and what patients may expect.

Watch the full video: https://www.youtube.com/watch?v=WLPtNiyflYA

The video is part of NORD’s Rare Disease Video Library, which features more than 120 free educational videos in English and Spanish for patients, families, caregivers, health care professionals, students and anyone looking to better understand rare conditions.

Explore the library: https://rarediseases.org/video-library/

09/03/2026

¡La inscripción ya está abierta para el primer evento virtual , Living Stronger de NORD completamente en español! 🎉 https://bit.ly/4cpOQjh

Únase a nosotros el sábado 3 de octubre, de mediodía a 2:30 p.m. ET en Zoom para un evento gratuito que reúne a pacientes, familias y cuidadores de enfermedades raras para la educación y la conexión con la comunidad.

Los participantes pueden esperar:
• Información dirigida por expertos sobre genética y los próximos pasos después de un diagnóstico de una enfermedad rara
• Oportunidades para conectarse con otros pacientes y familias

La programación será en español, con interpretación simultánea en vivo disponible en inglés.

Regístrese hoy: https://bit.ly/4cpOQjh

Por favor, comparta esta información con alguien de su comunidad que pueda beneficiarse de este evento.

09/02/2026

What happens when patients help shape rare cancer research?

Join NORD’s Rare Cancer Coalition on Thursday, Sept. 17, at noon ET for a webinar exploring how patient perspectives can strengthen rare cancer research in recognition of Rare Cancer Day.

Experts and patients will discuss:
- Opportunities and challenges rare cancer patients face when participating in research
- Why incorporating patient perspectives is essential to advancing future studies

Together, we can help shape the future of rare cancer research. Register today and be part of the conversation.
https://bit.ly/4y8UGxQ

09/01/2026

Newborn Screening is one of the earliest opportunities to identify serious rare conditions, but the conditions included on screening panels vary from state to state.

Because some states screen for more rare conditions than others, a baby’s ZIP code can affect how early they receive a diagnosis and medical intervention. The NORD State Report Card grades states according to how many conditions from the Recommended Uniform Screening Panel they include.

This Newborn Screening Awareness Month, see where your state ranks and learn why these differences matter: https://bit.ly/3B3U7ui

09/01/2026

Lace up, gather your crew, and make every step count!

Registration is open for the 2026 NORD National Turkey Trot, bringing the Running for Rare community together this Thanksgiving season!

Whether you gobble, wobble, stroll, roll, or run 🦃 👟 ♿, you can participate from wherever you are while supporting NORD's work on behalf of the more than 30 million Americans living with a rare disease.

Super Early Bird registration is only $25 for adults and $15 for kids through Oct. 1. Use code TROT&SAVE at checkout to lock in your discount. Gather your crew and choose how you'll move.

Make giving back part of your tradition. Register for the Turkey Trot today: https://bit.ly/4qPGkA7