🏳️National Organization for Rare Disorders | NORD

Website faviconrarediseases.org

NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases

National Organization for Rare Disorders

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NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.

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### Patient Assistance Programs

](https://rarediseases.org/living-with-a-rare-disease/patient-assistance-programs/ "Link to - Patient Assistance Programs")

Get help with access to medication, diagnostics, caregivers support, and other needs.

[Get support](https://rarediseases.org/living-with-a-rare-disease/patient-assistance-programs/)

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### Rare Disease Database

](https://rarediseases.org/rare-diseases/ "Link to - Rare Disease Database")

Learn more about 1,200 rare diseases through our comprehensive database.

[Search now](https://rarediseases.org/rare-diseases/)

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### Centers of Excellence

](https://rarediseases.org/rare-disease-centers-of-excellence/ "Link to - Centers of Excellence")

NORDÂŽ Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients.

[Learn More](https://rarediseases.org/rare-disease-centers-of-excellence/)

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### IAMRAREÂŽ Program

](https://rarediseases.org/advancing-research/iamrare-patient-registry-platform/ "Link to - IAMRARE<sup>ÂŽ</sup> Program")

Assist researchers throughout the world better understand and treat rare diseases by enrolling in our registry and sharing your experiences.

[Get involved](https://rarediseases.org/advancing-research/iamrare-patient-registry-platform/)

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### Living Rare Study

](https://livingrarestudy.org/ "Link to - Living Rare Study")

Adults living with rare disease and caregivers share their lived experiences to help drive positive change

[Participate Today](https://livingrarestudy.org/)

Knowledge is Empowering

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You or a loved one has received a diagnosis. Now what? Gaining knowledge, connecting with advocacy organizations, and learning about treatment at places like the Centers for Excellence are the next steps.

[Learn about living with a rare disease](https://rarediseases.org/living-with-a-rare-disease/)

Latest News & Events

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### Latest News

#### [Highlights from Rare Disease Day 2025](https://rarediseases.org/highlights-from-rare-disease-day-2025/ "Link to Highlights from Rare Disease Day 2025")

Published March 11, 2025

[Continue Reading](https://rarediseases.org/highlights-from-rare-disease-day-2025/ "Link to Highlights from Rare Disease Day 2025")

#### [NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease](https://rarediseases.org/nord-paramount-pictures/ "Link to NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease")

Published February 27, 2025

[Continue Reading](https://rarediseases.org/nord-paramount-pictures/ "Link to NORD, Paramount Pictures Join Forces to Raise Awareness of Rare Disease")

#### [NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities](https://rarediseases.org/bionews-keepin-it-rare/ "Link to NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities")

Published February 21, 2025

[Continue Reading](https://rarediseases.org/bionews-keepin-it-rare/ "Link to NORD, Bionews Partner to Bring Powerful Educational Content to Rare Disease Communities")

#### [NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume](https://rarediseases.org/nords-latest-annual-state-report-card-provides-crucial-benchmark-as-state-legislative-sessions-resume/ "Link to NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume")

Published February 19, 2025

[Continue Reading](https://rarediseases.org/nords-latest-annual-state-report-card-provides-crucial-benchmark-as-state-legislative-sessions-resume/ "Link to NORD’s Latest Annual State Report Card Provides Crucial Benchmark as State Legislative Sessions Resume")

#### [Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28](https://rarediseases.org/rare-is-everywhere-be-a-champion-to-the-rare-disease-community-this-feb-28/ "Link to Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28")

Published February 19, 2025

[Continue Reading](https://rarediseases.org/rare-is-everywhere-be-a-champion-to-the-rare-disease-community-this-feb-28/ "Link to Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28")

### Upcoming Events

#### [Pulmonary Hypertension Community Workshop – Charlotte](https://rarediseases.org/event/ph-community-workshop-charlotte/ "Link to Pulmonary Hypertension Community Workshop – Charlotte")

When: March 22 @ 9:00 am - March 22 @ 3:15 pm

[Learn More](https://rarediseases.org/event/ph-community-workshop-charlotte/ "Link toPulmonary Hypertension Community Workshop – Charlotte")

#### [2025 Special Day for Special Kids](https://rarediseases.org/event/2025-special-day-for-special-kids/ "Link to 2025 Special Day for Special Kids")

When: March 22 @ 1:00 pm - March 22 @ 5:00 pm

[Learn More](https://rarediseases.org/event/2025-special-day-for-special-kids/ "Link to2025 Special Day for Special Kids")

#### [Adrenal Insufficiency United is excited to be coming to Portland, OR on March 25th! Our Lunch & Learn Mini Conference](https://rarediseases.org/event/adrenal-insufficiency-united-is-excited-to-be-coming-to-portland-or-on-march-25th-our-lunch-learn-mini-conference/ "Link to Adrenal Insufficiency United is excited to be coming to Portland, OR on March 25th! Our Lunch & Learn Mini Conference")

When: March 25 - March 25

[Learn More](https://rarediseases.org/event/adrenal-insufficiency-united-is-excited-to-be-coming-to-portland-or-on-march-25th-our-lunch-learn-mini-conference/ "Link toAdrenal Insufficiency United is excited to be coming to Portland, OR on March 25th! Our Lunch & Learn Mini Conference")

#### [AIHA Awareness Day 2025](https://rarediseases.org/event/aiha-awareness-day-2025/ "Link to AIHA Awareness Day 2025")

When: March 25 @ 9:00 am - March 25 @ 3:00 pm

[Learn More](https://rarediseases.org/event/aiha-awareness-day-2025/ "Link toAIHA Awareness Day 2025")

#### [United MSD Foundation’s Annual Zebra Run](https://rarediseases.org/event/united-msd-foundations-annual-zebra-run/ "Link to United MSD Foundation’s Annual Zebra Run")

When: March 29 - March 29

[Learn More](https://rarediseases.org/event/united-msd-foundations-annual-zebra-run/ "Link toUnited MSD Foundation’s Annual Zebra Run")

How Can We Help You?

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### [Policy and Advocacy](https://rarediseases.org/driving-policy/)

We help inform and advocate for legislation and policies that reflect the needs of rare disease patients and their families.

### [Disease Education](https://rarediseases.org/rare-diseases/)

We provide information about rare diseases, patient organizations and other resources. We also promote awareness of rare diseases among physicians and other medical professionals.

### [Patient Assistance Programs](https://rarediseases.org/living-with-a-rare-disease/patient-assistance-programs/)

We pioneered Patient Assistance Programs in 1987. Today, NORD programs include free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, expanded or emergency access, and more.

### [Patient Organization Mentorship](https://rarediseases.org/for-patient-organizations/)

Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. That’s why we provide capacity building and mentorship services to start-up and established organizations.

### [Research Support](https://rarediseases.org/advancing-research/research-grant-programs/)

Our grant programs have resulted in numerous published advances and at least two FDA-approved therapies.

### [International  

Partnerships](https://rarediseases.org/working-together/global-partnerships/)

NORD believes in the power of collaboration. It is the foundation upon which NORD was built. NORD works with partners in the patient community, government, academia, and industry who share the ultimate goal of identifying, treating, and curing rare diseases. In addition to the partnerships listed below, NORD works with many national partners to achieve its advocacy goals.

Our Mission

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The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy.

Advocating for Patient-Centered, Data-Driven Policy

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NORD helps drive more effective government policies by elevating the voice of the rare disease community.

[Our Rare Disease Policy in Action](https://rarediseases.org/driving-policy/)

“I just hope I can leave some footprints that matter --- to help pave the way” 

—Regina Bogar, Association for Creatine Deficiencies

[Make a Donation](https://rarediseases.org/donate/)

Finding Support Through Advocacy Organizations

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Patient advocacy organizations play a vital role in helping people with rare diseases live their best and fullest lives. We can help you find one or even start your own.

[Find your rare disease community](https://rarediseases.org/get-involved/patient-organizations/)

*   [For Patients & Caregivers](https://rarediseases.org/living-with-a-rare-disease/)

*   [For Organizations](https://rarediseases.org/for-patient-organizations/)

*   [For Clinicians & Researchers](https://rarediseases.org/clinicians-researchers/)

[Sign Up for NORD News](https://rarediseases.org/newsletter/)

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In these Standard Terms and Conditions, “Your Content” refers to any audio, video, text, images, or other material you provide or display. By providing “Your Content”, you grant NORD a license to read, use, reproduce, adapt, modify, publish, translate, and distribute the content in our marketing materials and to all media. “Your Content” must be your own and must not invade any third‐party’s rights. When you submit content or information to NORD, you are allowing the public to access and use that information, and to associate it with you. NORD reserves the right to remove “Your Content” at any time, without notice. We take your privacy very seriously. Subject to the Terms and Conditions above, NORD will never sell or disclose your personal information.

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