Special Announcement: Letter from NORD's CEO, Peter L. Saltonstall
For Patients & Caregivers
For Clinicians & Researchers
For Patient Organizations
NORD en Español
Contact NORD
We're celebrating
40 years!
Rare Disease News
Resource Library
About Us
Events
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
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
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
Home
/
draft guidance
Name
(Required)
First
Last
Hidden
Title
(Required)
Organization
(Required)
Interest
(Required)
CAPTCHA
Terms of Service & Privacy Policy
By continuing to use this website, you agree to the
Terms of Service & Privacy Policy
I Agree
