Resources

Are you struggling to get care?

Finding Others with Rare Disease Undiagnosed or Diagnosed Rare Disease

Finding Others with Rare Disease Undiagnosed or Diagnosed Rare Disease

NORD’s List of Rare Disease Patient Organizations

Finding Others with Rare Disease Undiagnosed or Diagnosed Rare Disease

NORD’s Facebook page to communicate with others with rare or undiagnosed diseases

Building a Medical Team

Building a Medical Team

Rare Disease Parenting: How to Advocate for Your Child in the Healthcare System

Building a Medical Team

NORD’s phone number and FAQs

Building a Medical Team

Undiagnosed Children, what to do next

Building a Medical Team

Global Genes Rare Concierge Patient services

Help with Insurance

Help with Insurance

NORD RareCare

Help with Insurance

7 tips for selecting health insurance with a pre-existing condition

Help with Insurance

Pan Foundation Applying for a Grant for Help

Help with Insurance

Advocating for Your Child: Navigating Health Insurance

Navigating Disagreements with Physicians

Navigating Disagreements with Physicians

Tiger mom’s guide for Sudden Hospitalizations for a Rare Disease Child

Medical Gaslighting

Medical Gaslighting

What to do About Medical Gaslighting:

Medical Gaslighting

How I got My Doctor to Hear Me

Medical Gaslighting

Patients with Unexplained Symptoms and Medical Gaslighting: What to do when you feel your doctor isn't listening

Medical Gaslighting

Top 10 Safety Concerns 2025:

Medical Gaslighting is the Number One Safety Concern in Surveys of Patients.

Patient Advocates:

Patient Advocates:

Claire Sachs

Patient Advocates:

Effie Parks

Additional Resources:

For Patients »

Do No Harm Project

For Healthcare Providers »