Get empowered on your rare disease journey

We want to empower you to know more about rare disease. Read the journeys of people who live every day with a rare disease, and learn about the new research and researchers working to create a better future.

VIDEO & PODCASTS

 
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Real Stories

 
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Blog v2
Defining the Disease: The MOG Project
Defining the Disease: The MOG Project
Visiting the Disease: Orit’s Story
Visiting the Disease: Orit’s Story
Embrace the Ask: How to Seek The Support You Need
Embrace the Ask: How to Seek The Support You Need
Why Is It So Hard to Ask for Help?
Why Is It So Hard to Ask for Help?
Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey
Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey
What is a Child Life Specialist?
What is a Child Life Specialist?
We All Have a Story to Tell
We All Have a Story to Tell
Role Models Light the Way
Role Models Light the Way
Hello, Adversity: Introducing Chris Anselmo
Hello, Adversity: Introducing Chris Anselmo
My Unexpected and Powerful Clinical Trial Journey
My Unexpected and Powerful Clinical Trial Journey
Thriving Rare
Thriving Rare
Share your Rare: Krystel El Koussa
Share your Rare: Krystel El Koussa
Share your Rare: Alice's Story
Share your Rare: Alice's Story
A Myasthenia Gravis Health Story: Cate’s formula for remission despite life’s stress
A Myasthenia Gravis Health Story: Cate’s formula for remission despite life’s stress
Rare Mom Health Story: Irritability - a symptom of being a Rare Caregiver
Rare Mom Health Story: Irritability - a symptom of being a Rare Caregiver
Lindsay's Story: A Myasthenia Gravis Journey from Despair to Hope
Lindsay's Story: A Myasthenia Gravis Journey from Despair to Hope
What It’s Like To Live With ITP: Laura’s Story
What It’s Like To Live With ITP: Laura’s Story
What It’s Like To Live With ITP: Joan’s Story
What It’s Like To Live With ITP: Joan’s Story
A Day at a Time: Our Journey with Rare Disease and Relentless Seizures
A Day at a Time: Our Journey with Rare Disease and Relentless Seizures
Share Your Rare: Bryan Kelly
Share Your Rare: Bryan Kelly
Moving Mountains: Advocating for My Son’s Individual Education and Health Plans
Moving Mountains: Advocating for My Son’s Individual Education and Health Plans
Katie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories
Katie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories
Living with Greig Cephalopolysyndactyly Syndrome
Living with Greig Cephalopolysyndactyly Syndrome
Living with FSGS
Living with FSGS
The Complicated Grief of Losing Someone with a Rare Disease
The Complicated Grief of Losing Someone with a Rare Disease
What I Wish I'd Known About Prader-Willi Syndrome
What I Wish I'd Known About Prader-Willi Syndrome
What I Learned About Caring For Someone with Sickle Cell Disease
What I Learned About Caring For Someone with Sickle Cell Disease
Soar: A Posthumously Published Memoir About One Woman's Defiance in the Face of Sickle Cell Disease
Soar: A Posthumously Published Memoir About One Woman's Defiance in the Face of Sickle Cell Disease
A Dragon Mom’s Story: Facing Grief and Life Threatening Illness with Poetry
A Dragon Mom’s Story: Facing Grief and Life Threatening Illness with Poetry
Clinical Trials: One Mother's Journey to Treatment
Clinical Trials: One Mother's Journey to Treatment

Rare tips

 
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Blog v2
How is Congenital Myastenic Syndrome (CMS) Different from Myasthenia Gravis (MG)?
How is Congenital Myastenic Syndrome (CMS) Different from Myasthenia Gravis (MG)?
What You Need to Know about CMS and Clinical Trials
What You Need to Know about CMS and Clinical Trials
Needle Phobia in Children: What It Is, What It Isn’t, and How to Help
Needle Phobia in Children: What It Is, What It Isn’t, and How to Help
What You Need to Know about the Link Between Oral Wellness and Your Overall Health
What You Need to Know about the Link Between Oral Wellness and Your Overall Health
Five Empowering Ways to Mark Rare Disease Month
Five Empowering Ways to Mark Rare Disease Month
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Teens, Substance Use, and Rare Disease
Safeguard Your Holidays: The Importance of Flu Protection
Safeguard Your Holidays: The Importance of Flu Protection
A Metabolic Dietician on Nutrition and Rare Disease
A Metabolic Dietician on Nutrition and Rare Disease
Know Rare Tips: How to Support a Friend Who’s Been Diagnosed With a Rare Disease
Know Rare Tips: How to Support a Friend Who’s Been Diagnosed With a Rare Disease
Navigating Adolescence with Rare Disease
Navigating Adolescence with Rare Disease
6 Tips to Help Fight Fatigue in Rare Disease
6 Tips to Help Fight Fatigue in Rare Disease
Living With Myasthenia Gravis: 10 Things to Know
Living With Myasthenia Gravis: 10 Things to Know
Healthy for the Holidays
Healthy for the Holidays
Tips for Managing a Rare Blistering Disease
Tips for Managing a Rare Blistering Disease
Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support
Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support
A Tiger Mom’s Guide for Sudden Hospitalization for a Child with a Rare Disease
A Tiger Mom’s Guide for Sudden Hospitalization for a Child with a Rare Disease
TargetCancer Foundation’s 5 Tips for Caregivers
TargetCancer Foundation’s 5 Tips for Caregivers
What Every Rare Cancer Patient Should Know
What Every Rare Cancer Patient Should Know
In Case of Emergency: Unleash the Power in Your Pocket
In Case of Emergency: Unleash the Power in Your Pocket
5 Things to Pack in your Emotional Toolkit
5 Things to Pack in your Emotional Toolkit
Plunging is Easy, Raising Money is Hard: Lessons to Help Other Rare Disease Fundraising Organizations
Plunging is Easy, Raising Money is Hard: Lessons to Help Other Rare Disease Fundraising Organizations
5 Ways Employers Can Support Rare Disease Caregivers in the Workplace
5 Ways Employers Can Support Rare Disease Caregivers in the Workplace
Planning for Pregnancy When You or Your Child has a Rare Genetic Disease
Planning for Pregnancy When You or Your Child has a Rare Genetic Disease
Three Tools for Finding an Expert in Your Rare Disease
Three Tools for Finding an Expert in Your Rare Disease
7 Tips For Finding a Clinical Trial for Your Rare Disease
7 Tips For Finding a Clinical Trial for Your Rare Disease
What is Ambiguous Loss and How to Cope with it
What is Ambiguous Loss and How to Cope with it
How to Reduce Anxiety Before Medical Procedures or Treatments
How to Reduce Anxiety Before Medical Procedures or Treatments

Rare Resiliency

 
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Mental health

 
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Rare leaders

 
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Clinical trials

 
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