Real Stories

 
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Blog v2
Share your Rare: Edward Gent
Share your Rare: Edward Gent
On Family, Fortitude, and Forces of Nature
On Family, Fortitude, and Forces of Nature
Lindsay’s Story: What It’s Like to Live with Myositis
Lindsay’s Story: What It’s Like to Live with Myositis
Defining the Disease: The MOG Project
Defining the Disease: The MOG Project
Visiting the Disease: Orit’s Story
Visiting the Disease: Orit’s Story
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

Rare tips

 
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Blog v2
Three Ways to Get Access to High Cost Treatments
Three Ways to Get Access to High Cost Treatments
The Surprising Link Between Exercise and Myositis
The Surprising Link Between Exercise and Myositis
How is Congenital Myasthenic Syndrome (CMS) Different from Myasthenia Gravis (MG)?
How is Congenital Myasthenic 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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Organization Spotlight

 
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News

 
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Blog v2
Latest News in Sickle Cell Disease
Latest News in Sickle Cell Disease
Perceptions of Pain: Research Shows It’s Personal
Perceptions of Pain: Research Shows It’s Personal
Why Men's Health Week Matters for the Rare Community
Why Men's Health Week Matters for the Rare Community
Mark Your Calendar for TSF's Atlanta Patient Day
Mark Your Calendar for TSF's Atlanta Patient Day
May Is Myositis Awareness Month
May Is Myositis Awareness Month
Why 2024 Is Already an Encouraging Year for the Rare Disease Community
Why 2024 Is Already an Encouraging Year for the Rare Disease Community
National Tay-Sachs & Allied Diseases Association Hosts First of Its Kind Drug Development Meeting for GM2
National Tay-Sachs & Allied Diseases Association Hosts First of Its Kind Drug Development Meeting for GM2
FDA Recognition for New Drug from Edgewise Therapeutics Marks Breakthrough for Duchenne and Becker Treatments
FDA Recognition for New Drug from Edgewise Therapeutics Marks Breakthrough for Duchenne and Becker Treatments
From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her
From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her
Clinical Trial Paves the Way for a Groundbreaking New Myasthenia Gravis Treatment
Clinical Trial Paves the Way for a Groundbreaking New Myasthenia Gravis Treatment
Covid-19 and Myositis: Recent Findings
Covid-19 and Myositis: Recent Findings
A personal approach to the development of new treatments in rare disease
A personal approach to the development of new treatments in rare disease
New Way to Study the Mental Capabilities of Children Over 12 With PA or MMA
New Way to Study the Mental Capabilities of Children Over 12 With PA or MMA
Famously Rare: Celebrities Diagnosed With Rare Diseases
Famously Rare: Celebrities Diagnosed With Rare Diseases
A Rare Disease True Crime Story
A Rare Disease True Crime Story
Effects of a 6-Month Yoga Program on Kidney Function and Quality of Life
Effects of a 6-Month Yoga Program on Kidney Function and Quality of Life
Confronting Racial and Ethnic Disparities in Rare Disease Care
Confronting Racial and Ethnic Disparities in Rare Disease Care
One Bad Take: A Daily Newspaper Misses the Target on Prenatal Testing
One Bad Take: A Daily Newspaper Misses the Target on Prenatal Testing
Primary mitochondrial myopathies: researchers explore new pathways for treatment
Primary mitochondrial myopathies: researchers explore new pathways for treatment
Rare Disease Diversity Coalition Formed To End Racial Disparities In Rare Disease Diagnosis, Research, And Treatment
Rare Disease Diversity Coalition Formed To End Racial Disparities In Rare Disease Diagnosis, Research, And Treatment
Women Who Broke Barriers in Rare Disease
Women Who Broke Barriers in Rare Disease
Fusion Oncogene: When Two Genes Come Together, They May Cause Tumors to Grow
Fusion Oncogene: When Two Genes Come Together, They May Cause Tumors to Grow
Rare Cancer Research: Leading the Way to the Development of New Cancer Therapies
Rare Cancer Research: Leading the Way to the Development of New Cancer Therapies
Future of Rare Disease Treatment
Future of Rare Disease Treatment