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Text Content

 * Patients & Caregivers
 * Patient Organizations
 * Clinicians & Researchers
 * NORD en Español
 * Contact NORD


We're celebrating 40 years!

 * Donate
 * Rare Disease News
 * Resource Library
 * About Us
 * Events

 * Understanding Rare Disease
    *  * * Where to start
           * Rare Disease Facts and Statistics
           * NORD’s Rare Disease Database
           * Rare Disease Video Library
           * What It Means To Be Undiagnosed
           * Find A Rare Disease Organization
       * * Stay informed
           * Stories That Inspire
           * A Podcast For The Rare Disease Community
           * Rare Disease Day
           * Resource Library
           * Publications On Rare Disease
   
    *  * * Patient stories
           * Christina’s Lease on Life
           * Read More

 * Living with a Rare Disease
    *  * * Manage your care
           * Getting Help & Support
           * Managing Your Disease
       * * We can help
           * How NORD Can Help
           * Speak To Someone at NORD
           * Rare Disease Centers Of Excellence
           * Patient Assistance Programs
           * Explore Clinical Trials
           * Find A Patient Organization
           * Caregiver Resources
   
    *  * * You Are Not Alone.
           * Resources & Services
           * Learn More

 * Community Support
    * * Where to start
        * Rare Diseases Defined
        * Financial & Medical Assistance
        * Call Center & Information Services
        * Bringing Together Your Community
    * * Mentoring organizations
        * NORD Member List
        * Start a Rare Disease Organization
        * Membership Program
        * Becoming Research Ready
        * Patient-Focused Drug Development
    * * Improving clinical care
        * Rare Disease Centers of Excellence
        * Continuing Medical Education (CME)
    * * Partnering with the community
        * Corporate Council
        * National Partnerships
        * Global Partnerships
        * Diversity, Equity & Inclusion
    * * Community Support
        * Together We Are Strong.
        * Learn More

 * Advancing Research
    * * For patients
        * List of Rare Diseases
        * Gene Therapy for Rare Disease
        * Find Clinical Trials & Research Studies
    * * For researchers
        * Request for Proposals
        * Research Grant Programs
        * Data Standards for Rare Diseases
    * * For clinicians
        * Resources for Patients
        * Find a Rare Disease Care Center
        * Continuing Medical Education (CME)
    * * Connect
        * IAMRARE® Program Powered by NORD
        * Rare Disease Cures Accelerator (RDCA-DAP)
        * Add Your Expertise
    * * Featured publication
        * Accelerator Pathway report
        * View More

 * Driving Policy
    *  * * NORD policy and you
           * Public Policy Positions
           * Policy Statements & Letters to Policymakers
           * Rare Disease Advisory Councils
           * NORD’s State Report Card®
       * * Taking action
           * Join the Rare Action Network®
           * Policy & Advocacy Taskforce
           * Take Action on Key Issues
   
    *  * * Join A Current Campaign.
           * Learn about our current policy goals
           * Take Action

 * Get Involved
    * * Raising Awareness & Funds with NORD
        * Do-It-Yourself NORD Fundraiser
        * Students for Rare
        * Sports & Fitness Fundraisers
        * Media Inquiries
    * * In your community
        * Attend An Upcoming Event
        * Find a Rare Disease Patient Organization
        * Stay Informed With NORD’s Email Newsletter
        * Rare Disease Day®
    * * Patient stories
        * Share Your Story
        * Careers At NORD
        * Intern At NORD
        * Jobs At Patient Disease Organizations
    * * Corporate Council
        * About the Corporate Council
        * Corporate Council Members
        * Join Corporate Council
        * Code of Conduct
    * * Show Your Support
        * Donate to NORD
        * Volunteer with NORD
        * Visit the NORD Store

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 * Donate
 * Understanding Rare Disease
   * Where to start
     * Rare Disease Facts and Statistics
     * NORD’s Rare Disease Database
     * Rare Disease Video Library
     * What It Means To Be Undiagnosed
     * Find A Rare Disease Organization
   * Stay informed
     * Stories That Inspire
     * A Podcast For The Rare Disease Community
     * Rare Disease Day
     * Resource Library
     * Publications On Rare Disease
   * Patient stories
     * Read More
 * Living with a Rare Disease
   * Manage your care
     * Getting Help & Support
     * Managing Your Disease
   * We can help
     * How NORD Can Help
     * Speak To Someone at NORD
     * Rare Disease Center Of Excellence
     * Patient Assistance Programs
     * Explore Clinical Trials
     * Find A Patient Organization
     * Caregiver Resources
   * You Are Not Alone.
     * Read More
 * Community Support
   * Where to start
     * Rare Diseases Defined
     * Financial & Medical Assistance
     * Call Center & Information Services
     * Bringing Together Your Community
   * Mentoring organizations
     * NORD Member List
     * Start a Rare Disease Organization
     * Membership Program
     * Becoming Research Ready
     * Launching Registries & Natural History Studies
     * Patient-Focused Drug Development
   * Improving clinical care
     * Rare Disease Centers of Excellence
     * Continuing Medical Education (CME)
   * Partnering with the community
     * Corporate Council
     * National Partnerships
     * Global Parnerships
     * Diversity, Equity & Inclusion
   * Community Support
     * Learn More
 * Advancing Research
   * For patients
     * List of Rare Diseases
     * Gene Therapy for Rare Disease
     * Find Clinical Trials & Research Studies
   * For researchers
     * Request for Proposals
     * Research Grant Programs
     * Data Standards for Rare Diseases
   * For clinicians
     * Resources for Patients
     * Find a Rare Disease Care Center
     * Continuing Medical Education (CME)
   * Connect
     * IAMRARE® Program Powered by NORD
     * Rare Disease Cures Accelerator (RDCA-DAP)
     * Add Your Expertise
   * Featured publication
     * View More
 * Driving Policy
   * NORD policy and you
     * Today’s Policy Issues
     * NORD’s Policy Statements
     * Rare Disease Advisory Councils
     * NORD State Report Card
   * Taking action
     * Join the Rare Action Network®
     * Policy & Advocacy Taskforce
     * Contact your Representative
     * Take Action on Key Issues
   * Join A Current Campaign.
     * Learn about our current policy goals
 * Get Involved
   * Raising awareness and funds with NORD
     * Do-It-Yourself NORD Fundraiser
     * Students for Rare
     * Sports & Fitness Fundraisers
     * Media Inquiries
   * In your community
     * Attend An Upcoming Event
     * Find a Rare Disease Patient Organization
     * Stay Informed With NORD’s Email Newsletter
     * Rare Disease Day®
   * Patient stories
     * Share Your Story
     * Careers At NORD
     * Intern At NORD
     * Jobs At Patient Disease Organizations
   * Show your support
     * Donate to NORD
     * Volunteer with NORD
     * Visit the NORD Store
 * Rare Disease News
 * Resource Library
 * About Us
 * For Clinicians & Researchers
 * For Patient Organizations


NATIONAL ORGANIZATION FOR RARE DISORDERS

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.


PATIENT ASSISTANCE PROGRAMS

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

Get support


RARE DISEASE DATABASE

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

Search now


CENTERS OF EXCELLENCE

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

Learn More


IAMRARE® PROGRAM

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

Get involved


KNOWLEDGE IS EMPOWERING

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



LATEST NEWS & EVENTS


LATEST NEWS

FOUR ACTIONS FOR FASTER RARE DISEASE DIAGNOSIS AND IMPROVED HEALTH EQUITY, A
TAKEDA & NORD REPORT

Published October 16, 2023

Continue Reading

NORD LAUNCHES EDUCATION SERIES TO ADVANCE PATIENT INVOLVEMENT IN RARE DISEASE
DRUG DEVELOPMENT

Published October 16, 2023

Continue Reading

FINDING PURPOSE IN ADVOCACY: JENNY’S STORY IN HONOR OF RARE CANCER DAY

Published September 30, 2023

Continue Reading

THE IMPORTANCE OF ADVANCING TREATMENT OPTIONS: TONI’S STORY IN HONOR OF RARE
CANCER DAY

Published September 30, 2023

Continue Reading

THE PRIVILEGE OF ACCESS TO CARE: JENNIFER B.’S STORY IN HONOR OF RARE CANCER DAY

Published September 30, 2023

Continue Reading


UPCOMING EVENTS

INDO US BRIDGING RARE SUMMIT 2023

When: October 29 - October 30

Learn More

INTERNATIONAL LGS AWARENESS DAY & EPILEPSY AWARENESS MONTH

When: November 1 - November 30

Learn More

GLOBAL CONFERENCE ON ORTHOPEDIC SURGERY AND TRAUMA CARE

When: November 2 - November 4

Learn More

STROKE CONFERENCE 2023

When: November 2 - November 4

Learn More

STROKE CONFERENCE 2023

When: November 2 - November 2

Learn More


HOW CAN WE HELP YOU?


POLICY AND ADVOCACY



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




DISEASE EDUCATION



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



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



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



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




INTERNATIONAL
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

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

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

Our Rare Disease Policy in Action

“I just hope I can leave some footprints that matter --- to help pave the way” 
—Regina Bogar, Association for Creatine Deficiencies
Make a Donation


FINDING SUPPORT THROUGH ADVOCACY ORGANIZATIONS

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

 * For Patients & Caregivers
 * For Organizations
 * For Clinicians & Researchers

Sign Up for NORD News

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

1900 Crown Colony Drive
Suite 310
Quincy, MA 02169
Phone: 617-249-7300

OTHER LOCATIONS:

Danbury, CT Office
7 Kenosia Avenue
Danbury, CT 06810
Phone: 203-744-0100
Fax: 203-263-9938

Washington, DC Office
1779 Massachusetts Avenue
Suite 500
Washington, DC 20036
Phone: 202-588-5700

 

 * Understanding Rare Disease
   * Where to Start
   * Stay Informed
   * Patient Stories

 * Living with a Rare Disease
   * Manage Your Care
   * We Can Help

 * Community Support
   * Where to Start
   * Mentoring Organizations
   * Improving Clinical Care
   * Partnering With the Community
   * Community Support

 * Advancing Research
   * For Patients
   * For Researchers
   * For Clinicians
   * Connect
   * Publications

 * Driving Policy
   * NORD Policy Priorities
   * Taking Action
   * Join the Rare Action Network®
 * Donate
   * Donate to NORD
   * Donate to Research
 * Get Involved
 * Legal
   * TM & Brand Guidelines
   * Terms of Service & Privacy Policy

 * Rare Disease News
 * Resource Library
 * About Us
 * Media Inquiries
 * Get Involved
 * Careers
 * Sitemap
 * Contact

 * 
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 * 
 * 
 * 

Copyright ©2023 NORD – National Organization for Rare Disorders, Inc. All rights
reserved.

NORD is a registered 501(c)(3) charity organization.
Please note that NORD provides this information for the benefit of the rare
disease community. NORD is not a medical provider or health care facility and
thus can neither diagnose any disease or disorder nor endorse or recommend any
specific medical treatments. Patients must rely on the personal and
individualized medical advice of their qualified health care professionals
before seeking any information related to their particular diagnosis, cure or
treatment of a condition or disorder.



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