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
    RareEdu^® – Online Learning Platform
    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
Advancing Research
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

Search for:

Donate
Understanding Rare Disease
Living with a Rare Disease
Community Support
Advancing Research
Driving Policy
Get Involved
Rare Disease News
Resource Library
About Us
For Clinicians & Researchers
For Patient Organizations

Rare Disease Database

Rare Disease Database

Congenital disorder of glycosylation with developmental anomaly

Print

For more information, visit GARD.

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

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

Community Support

Advancing Research

Driving Policy
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 ©2024 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.

National Organization for Rare Disorders

Your Name(Required)

Your Email(Required)

I show my stripes for...(Required)

Max. 5 words

Photo(Required)

Max file size 5MB. Min. image size 260px X 260px

Drop files here or

Max. file size: 5 MB.

Your Message(Required)

Max. 15 words

Consent(Required)

I agree to the terms and conditions

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.

Phone

This field is for validation purposes and should be left unchanged.

Name(Required)

First Last

Email(Required)

Enter Email Confirm Email

Photos

Drop files here or

Accepted file types: jpeg, png, jpg, Max. file size: 3 MB.

Comments(Required)

Please let us know what's on your mind. Have a question for us? Ask away.

Name

This field is for validation purposes and should be left unchanged.

Name(Required)

First Last

Email(Required)

Enter Email Confirm Email

Comments(Required)

Please let us know what's on your mind. Have a question for us? Ask away.

Email

This field is for validation purposes and should be left unchanged.