Patients & Caregivers
Patient Organizations
For Clinicians & Researchers
NORD En español
Contact Us
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
Help for People with Undiagnosed Medical Conditions
Find A Rare Disease Organization
Diagnóstico Raro en Niños: Una Guía para los Padres para Encontrar el Diagnóstico de una Enfermedad Rara
A PCP Primer to Diagnosing Rare Disease in Children
Stay informed
Stories That Inspire
RareEdu
®
– Online Learning Platform
Rare Disease Day
Resource Library
State Resource Center
Publications On Rare Disease
Featured NORD Event
NORD® Living Rare, Living Stronger® Patient & Family Meeting
Learn More
Living with a Rare Disease
Manage your care
Getting Help & Support
Managing Your Disease
Telemedicina – Para Pacientes y Cuidadores
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
Discover Local Resources
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
Claim Your Care
Rare Disease Centers of Excellence
Continuing Medical Education (CME)
Partnering with the community
Corporate Council
National Partnerships
Global Partnerships
Rare Cancer Coalition
NORD Rare Impact Awards®
Featured NORD Event
NORD® Living Rare, Living Stronger® Patient & Family Meeting
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 NORD Event
NORD Rare Disease Scientific Symposium
Learn More
Driving Policy
NORD policy and you
Public Policy Positions
Policy Statements & Letters to Policymakers
Rare Disease Advisory Councils
NORD State Report Card
Taking action
Join the Rare Action Network®
Policy & Advocacy Taskforce
Take Action
Advocate for Rare Disease Policies as a Health Care Professional
Join A Current Campaign.
Learn about our current
policy goals
Take Action
Featured NORD Event
NORD® Rare Diseases & Orphan Products Breakthrough Summit®
Learn More
Get Involved
Raising Awareness & Funds with NORD
Do-It-Yourself NORD Fundraiser
NORD 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
Corporate Council
Corporate Council Members
Join Corporate Council
Corporate Council – Code of Conduct
Show Your Support
Donate
Volunteer Application
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
Diagnóstico Raro en Niños: Una Guía para los Padres para Encontrar el Diagnóstico de una Enfermedad Rara
A PCP Primer to Diagnosing Rare Disease in Children
Stay informed
Stories That Inspire
RareEdu
®
– Online Learning Platform
Rare Disease Day
Resource Library
State Resource Center – Find Local Resources
Publications On Rare Disease
NORD® Living Rare, Living Stronger® Patient & Family Meeting
Learn 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
State Resource Center – Discover Local Resources
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
NORD® Living Rare, Living Stronger® Patient & Family Meeting
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
NORD Rare Disease Scientific Symposium
Learn 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
Advocate for Rare Disease Policies as a Health Care Professional
Join A Current Campaign.
Learn about our current policy goals
Get Involved
Raising awareness and funds with NORD
Do-It-Yourself NORD Fundraiser
NORD 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
Volunteer Application
Visit the NORD Store
Rare Disease News
Resource Library
About Us
For Clinicians & Researchers
For Patient Organizations
Home
/
Rare Disease Video Library
Set Valu
Keyword Search
Video Topic
>
Select an option
Patient and Caregiver Stories
Patient Registries
Research and Drug Development
Specific Rare Diseases
Topics of Interest
¿Por qué debería hacerme una prueba genética si ya tengo un diagnóstico?
Watch Video
Abetalipoproteinemia/Undiagnosed, Noah’s Story
Watch Video
Activated Phosphoinositide 3-Kinase Delta Syndrome (APDS)
Watch Video
Adrenoleukodystrophy
Watch Video
Adrenoleukodystrophy, Taylor’s Story
Watch Video
Alagille Syndrome
Watch Video
Alagille Syndrome (Spanish)
Watch Video
Aplastic Anemia, Lydia’s Story
Watch Video
Aromatic L-Amino Acid Decarboxylase Deficiency
Watch Video
Autoimmune Polyglandular Syndrome Type 1
Watch Video
1
2
3
4
5
6
7
...
12
»