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
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
Search for:
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
RareEdu
®
– Online Learning Platform
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
Rare Disease Database
Rare Disease Database
Hydrocephalus, costovertebral dysplasia, and Sprengel anomaly
Print
Synonyms
Hydrocephalus, skeletal anomalies, and mental disturbance
Waaler-Aarskog syndrome
Ferlini-Ragno-Calzolari syndrome
For more information, visit
GARD
.
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
Select files
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.
Comments
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
Select files
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.
Phone
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.
Comments
This field is for validation purposes and should be left unchanged.
×
