• 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
          • Post-DBS-op-Me-eating-McDonalds-and-Loving-it-e1652280852247Christina’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.
          • Woman using laptop and having video call with her doctor while sitting at home.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
        • Diverse Group of People with their Heads Together Showing FriendshipTogether 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.
          • nord-nav-policy-alertLearn 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
  • 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
  • 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

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.

Name(Required)
Hidden

Terms of Service & Privacy Policy

By continuing to use this website, you agree to the Terms of Service & Privacy Policy

NORD Breakthrough Summit | Rare Disease Conference