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Ambassador Stories
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February 8, 2023
I Advocate Not Only For Melissa, But For All People With PA
It’s important us PA parents keep using our voices to push for more research.
by Kathy Stagni, as-told-to AllStripes
All blog posts
Categories:
Ambassador Stories
Explainers
News
Rare Life
Research
Staff Stories
From Italy to Holland, One Step at a Time
February 1, 2023
Staff Stories
All About Genetic Counseling
January 12, 2023
Explainers
‘I Was Raised Reading Food Labels’
December 19, 2022
Ambassador Stories
Quinn Finds Joy in Everything
December 8, 2022
Ambassador Stories
This Holiday Season, Talk About Your Family Health History
November 23, 2022
Rare Life
Feeling More Me
November 14, 2022
Rare Life
The Truth About Growing Up With Fabry Disease
October 31, 2022
Ambassador Stories
Bringing a Creative Approach to My Access Tools
October 19, 2022
Rare Life
‘A Liver Transplant Is a Huge Freaking Deal’
October 13, 2022
Ambassador Stories
5 Mental Health Resources to Help Rare Patients & Families Feel Less Alone
October 10, 2022
Rare Life
The Future of Sickle Cell Care
September 23, 2022
Explainers
We Were Asking Questions Nobody Could Answer
September 23, 2022
Ambassador Stories
‘It was a patient.’
September 20, 2022
Having IBM Taught Me to Live Day by Day
September 9, 2022
Ambassador Stories
Photos Not Taken: A Video Series on Living With Sickle Cell Disease
August 31, 2022
Rare Life
Jana and I Were Each Other’s Friends
August 22, 2022
Ambassador Stories
How Far Are Rare Patients Going for Care?
August 17, 2022
News
As a Black Woman, I Felt Like My Pain Wasn’t Taken Seriously
August 9, 2022
Ambassador Stories
When a Rare Disease Threatens Your Livelihood — and Your Life
August 1, 2022
Rare Life
‘Even Though I’m in Remission, I’m Still Tired’
July 25, 2022
Ambassador Stories
Life With Leigh Syndrome Is Even Bigger Than I Thought It Would Be
July 18, 2022
Ambassador Stories
7 Movies and TV Shows Featuring Characters With a Rare Disease
July 11, 2022
Rare Life
‘Hi, I’m Ken With AMN’
June 27, 2022
Rare Life
COVID-19 and the Rare Community
June 27, 2022
News
Now, I Understand My Dad in a Way I Never Have Before
June 16, 2022
Staff Stories
An Inside Look Into the Lives of 2 Sickle Cell Advocates
June 15, 2022
Rare Life
‘Growing Up, I Was Different From Everyone Else’
June 6, 2022
Ambassador Stories
How I Stopped Being Embarrassed and Started Deepening My Friendships
May 26, 2022
Rare Life
Even as a Nurse, I Was Overwhelmed
May 24, 2022
Ambassador Stories
Advice for a Parent Raising a Rare Child, From a Rare Adult
May 19, 2022
Ambassador Stories
7 Books Featuring Kids with Rare Diseases
May 13, 2022
Rare Life
I Will Always Have Dwarfism
May 10, 2022
Ambassador Stories
Going From ‘Crigler Kid’ to Post-Transplant Adult
May 5, 2022
Ambassador Stories
‘I Think You Should Get Upset About Big Things’
May 3, 2022
Rare Life
When People Point and Stare
April 29, 2022
Rare Life
What Fabry Disease Taught My Family About Mental Health
April 27, 2022
Rare Life
A Day in the Life With Sadie
April 19, 2022
Ambassador Stories
How TikTok Can Raise Awareness for MLD
April 15, 2022
Ambassador Stories
The Coach Taking on Sarcoidosis
April 13, 2022
Ambassador Stories
No Family Facing a Rare Diagnosis Should Get Outdated Information
April 11, 2022
Ambassador Stories
AllStripes’ Ambassador Program
April 8, 2022
Rare Life
When Every Day Is Rare Disease Day
March 28, 2022
Rare Life
What’s Really Important in Life
March 25, 2022
Ambassador Stories
My Son Graham
March 17, 2022
Staff Stories
When Your Child’s Experience Can Help Someone Else
March 15, 2022
Ambassador Stories
‘It’s Okay to Talk About It’
March 10, 2022
Rare Life
It’s Not ‘Just’ Fatigue
March 8, 2022
Ambassador Stories
How to Find a Culturally Competent Provider
March 7, 2022
Explainers
Playing Cody on ABC's 'The Good Doctor' and Representing Kabuki Syndrome on TV
March 7, 2022
Ambassador Stories
We Don’t Want Other Parents to Feel the Same Pain
March 3, 2022
Ambassador Stories
Tracing the Underrepresentation of Black Physicians in America
February 24, 2022
Explainers
What Boldness Means to Me
February 17, 2022
Ambassador Stories
How I Start Conversations About Sickle Cell
February 15, 2022
Ambassador Stories
5 Ways to Observe This Year's Black History Month
February 10, 2022
I Learned I Couldn’t Do This Alone
February 10, 2022
Rare Life
Lifting Up Legacy Families
February 8, 2022
Ambassador Stories
Living With a Rare Disease Is Not Cheap
February 3, 2022
Ambassador Stories
My Medical Binder, My Rare Diagnosis — and Everything After
February 1, 2022
Staff Stories
Finding a New ‘Normal’
January 27, 2022
Ambassador Stories
3 Lives, 3 Different ALD Experiences
January 25, 2022
Rare Life
The Power of Hashtags
January 20, 2022
Ambassador Stories
11-Year-Old Matthew Has Advice for Anyone Whose Sibling Has a Rare Disease
January 13, 2022
Ambassador Stories
Dreams of Motherhood, Deferred
January 12, 2022
Ambassador Stories
I Know Firsthand the Treatment Options Are Not Adequate
January 4, 2022
Ambassador Stories
The Most Important Thing I’ve Learned Since My Daughter Was Diagnosed With Kabuki Syndrome
December 20, 2021
Ambassador Stories
What I Realized After My Son Ezra Was Diagnosed With IRF2BPL
December 14, 2021
Ambassador Stories
Rare Disease Data Collection: Challenges and Alternatives
December 3, 2021
Research
Our Daughter's Batten Disease Diagnosis Made Us Determined
November 8, 2021
Ambassador Stories
For Me, CN1 Meant a Liver Transplant — and Learning to Sleep Without Phototherapy Lights
November 1, 2021
Ambassador Stories
‘Hi, My Mom Has PSP’
November 1, 2021
Ambassador Stories
6 Questions About NPC for Dr. Elizabeth Berry-Kravis of Rush University Medical Center
October 25, 2021
What Does ‘Care Team’ Mean to You?
October 18, 2021
Rare Life
8 Highlights From the Global Genes RARE Patient Advocacy Summit
October 12, 2021
Rare Life
What I Want People to Understand About Having Morquio A
October 12, 2021
Ambassador Stories
‘My Purpose Right Now Is to Help Her Be the Best She Can Be’
September 30, 2021
Ambassador Stories
‘Why Not Try to Live a Little?’
September 7, 2021
Ambassador Stories
What’s the Difference Between a 504 and an IEP?
August 30, 2021
Explainers
The Many Forms of Grief
August 30, 2021
Rare Life
AllStripes Raises $50 Million in Series B Funding to Transform Rare Disease Research
August 24, 2021
News
AllStripes Is a Public Benefit Corporation
August 24, 2021
News
‘You Have to Stay Positive — But You’ve Got to Get to That Point First.’
August 23, 2021
Ambassador Stories
Everything to Know About Drug Repurposing
August 16, 2021
Explainers
What It’s Like to Live With a ‘Children’s Disease’ at 38
August 9, 2021
Ambassador Stories
3 Links: Representation, the Time Tax and Support
August 9, 2021
Rare Life
3 Links: Disability Pride Month
August 2, 2021
Rare Life
‘No One Could Figure Out What Was Wrong’
August 2, 2021
Ambassador Stories
A Glimpse Into Linnea’s Future
July 26, 2021
Ambassador Stories
I Freaking Love Selfies
July 26, 2021
Rare Life
‘We Didn’t Know What Was Happening to Her’
July 19, 2021
Ambassador Stories
Karen Wants More People to Know Her Son — and to Learn About Lesch–Nyhan Syndrome
July 12, 2021
Ambassador Stories
‘It’s About More Than Just Me’
June 25, 2021
Ambassador Stories
The Answer to a Question James Had Been Asking for 31 Years
June 18, 2021
Ambassador Stories
Stella's CDKL5 Diagnosis Showed Him What Life Is All About
June 18, 2021
Ambassador Stories
Bullied Because of a Rare Condition, This Dancer Is Now Redefining Beauty
June 11, 2021
Ambassador Stories
Scott Isn’t Going to Let His IBM Diagnosis Define Him
May 31, 2021
Ambassador Stories
Shaye Is Grateful That Social Media Can Connect Her With Others Impacted by HDFN
May 30, 2021
Ambassador Stories
How a Sore Throat Led to Elizabeth’s GLA Diagnosis
May 28, 2021
Ambassador Stories
Cure IBM: Growing Research and Awareness for the Common Muscle Disease
May 21, 2021
Rare Life
A Coin-Sized Dent in Sarah’s Skull Was the First Sign of GSD, or ‘Vanishing Bone Disease’
May 21, 2021
Ambassador Stories
A Repurposed Drug Helps Michael Do the Things He Loves, While KLA Research Continues
May 21, 2021
Ambassador Stories
Mandy Is the First Person in the World Found With This Variant in the PIK3CA Gene
May 7, 2021
Ambassador Stories
Mick Has a Daily Practice for Coping With His CIDP Diagnosis
May 7, 2021
Ambassador Stories
‘It’s Important to Us That People Know Who She Was’
May 7, 2021
Ambassador Stories
How Having a Child With a Rare Disease Changed Danielle’s Teaching Style
April 30, 2021
Ambassador Stories
12 Podcasts Highlighting Voices From the Rare Disease Community
April 23, 2021
Explainers
What Kristen Learned After Her Son Sam Was Diagnosed With GM2
April 22, 2021
Ambassador Stories
4 Ways People With Inclusion Body Myositis Can Contribute to Research
April 20, 2021
Rare Life
Tips for Preparing for a Doctor’s Appointment When You Have a Rare Condition
April 9, 2021
Rare Life
These Partners On and Off the Dance Floor Are Pushing for PSP Research Together
April 8, 2021
Ambassador Stories
When She Couldn’t Find a Video of a Woman in a Wheelchair Dancing at Her Wedding, Deborah Made One Herself
April 1, 2021
Ambassador Stories
Rare Diseases and Autism Spectrum Disorder: What You Should Know
April 1, 2021
Explainers
Jessie’s Son’s CCM3 Diagnosis Unlocked a Family Medical Mystery
March 26, 2021
Ambassador Stories
Al’s Love for Prince and Phish Helps Him Cope With GM2
March 26, 2021
Ambassador Stories
What Is Newborn Screening and Why Is It Important?
March 19, 2021
Explainers
How Leeya’s GLA Diagnosis Tested Friendships and Led to a Passion for Advocacy
March 19, 2021
Ambassador Stories
After Victor Was Diagnosed With CLOVES and MCAP, Jenny Decided to Focus on the Things He Can Do
March 19, 2021
Ambassador Stories
How Stephan Learned to Cope With His Son’s Completely Unexpected Diagnosis of SURF1-Associated Leigh Syndrome
March 11, 2021
Ambassador Stories
Manuel Wants to Make Sure Newcomers to the IBM Community Get Support From the Start
March 11, 2021
Ambassador Stories
How Larry Is Honoring His Wife Rachel
March 11, 2021
Ambassador Stories
I’m Grateful for Every Moment I Get to Spend Alive and Well
March 5, 2021
Ambassador Stories
The Kleefstra Community Helped Matt Adjust to His Family's New Reality
March 5, 2021
Ambassador Stories
13 ‘Rare Disease Truths’ That Will Make You Think
February 25, 2021
Rare Life
What Charles Has Learned From the CCM3 Community
February 25, 2021
Ambassador Stories
‘Keep Looking, Keep Working and Keep Fighting’
February 19, 2021
Ambassador Stories
Together, We Are a Force
February 19, 2021
Ambassador Stories
The Personal Stories That Motivate the AllStripes Team to Fight for the Rare Disease Community
February 19, 2021
Staff Stories
AllStripes Expands Rare Disease Research Programs to United Kingdom
February 12, 2021
News
‘The Road Ahead Is Going to Be Difficult, But You Are Equipped for It’
February 12, 2021
Ambassador Stories
When Children Become the Caregivers
February 12, 2021
Ambassador Stories
Stephen Started a Facebook Group to Bring Positivity to the Myasthenia Gravis Community
February 12, 2021
Ambassador Stories
‘I Have More Hope Now Than I Ever Did Before’
February 5, 2021
Ambassador Stories
‘Make Sure You Find a Support System’
February 5, 2021
Ambassador Stories
Lindsay Helps Teens With Physical Differences Embrace Who They Are
January 28, 2021
Ambassador Stories
Whole Exome Sequencing Gave This Family a Diagnosis That Changed Their Whole Perspective
January 22, 2021
Ambassador Stories
‘I Would Gladly Trade My Disability Plate for a Cure’
January 22, 2021
Ambassador Stories
After 40 Years of Questions, These Siblings Finally Got an Answer
January 15, 2021
Ambassador Stories
How Kim’s Parental Intuition Helped Her Son James Get Diagnosed
January 14, 2021
Ambassador Stories
Tim’s Rare Disease Journal Is Helping Thousands of People Find Hope
January 14, 2021
Ambassador Stories
Andrea Wants People With Rare Disease to Be Treated Like Everyone Else
January 6, 2021
Ambassador Stories
AllStripes 2020 Year in Review
December 30, 2020
News
10 Things to Know About Wilson Disease
December 9, 2020
Explainers
What Happened When Kasey Joined Forces With Other Parents
December 4, 2020
Ambassador Stories
To Honor Her Sons’ Legacies, This Mom Dedicated Her Life to Helping Others
November 23, 2020
Ambassador Stories
‘Just Keep Grinding’: How Jareb Deals With Wilson Disease
November 23, 2020
Ambassador Stories
AllStripes Partners With Cambridge Rare Disease Network for ‘RAREfest20’ Virtual Festival
November 13, 2020
News
How Having a Rare Disease Took a Toll on Leah’s Friendships
October 30, 2020
Ambassador Stories
Ensuring High-Quality Data for Rare Disease Research
October 23, 2020
Explainers
After Her Daughter Jessica Was Diagnosed With NF2, Lisa Knew Knowledge Would Be Power
October 13, 2020
Ambassador Stories
A PSP Wish List: Common Items People Impacted by PSP Might Need
October 9, 2020
Rare Life
It’s Official, RDMD Has a New Name: AllStripes
September 15, 2020
News
This Mom Is Fighting for Answers After Losing Two of Her Children to a Rare Disease
September 4, 2020
Ambassador Stories
‘I Decided to Fight Like a Mother’
August 14, 2020
Ambassador Stories
Raising Awareness for Rare: One Day at a Time
August 14, 2020
Rare Life
These Parents Took a Gamble to Save Their Son’s Hearing From a Rare Disease
July 24, 2020
Ambassador Stories
How Randy Found a New Purpose
June 25, 2020
Ambassador Stories
'Don't Panic. You're Not Alone.'
June 18, 2020
Ambassador Stories
‘It Is Time for Patients to Gain More Power Over Their Health’
June 5, 2020
News
‘There Really Isn’t Anyone Else Who Understands’
June 4, 2020
Ambassador Stories
These Parents Raised $3 Million to Jumpstart Research on Their Daughter’s Rare Disease
May 28, 2020
Ambassador Stories
The Legacy Mary Helped Jerry Make
May 14, 2020
Ambassador Stories
How Myositis Support and Understanding Association Adapts and Stays Nimble
May 8, 2020
News
Growing Up Rare: How Keeping Hannah’s Diagnosis Quiet Affected Her Mental Health
April 30, 2020
Ambassador Stories
How the Rare Disease Community Is Adapting to COVID-19 Restrictions
April 23, 2020
Rare Life
A Message to Our Community: AllStripes Raises $14 Million to Advance Drug Development for Rare Diseases
April 16, 2020
News
9 Ways to Stay Connected to Seniors and Immunocompromised Friends During COVID-19 Social Distancing
March 26, 2020
Rare Life
What Is a Patient Registry, and How Is AllStripes Different?
February 20, 2020
Explainers
Emily Wants to Show Other Caregivers the Importance of Taking Care of Yourself
February 13, 2020
Ambassador Stories
Doctors First Thought Mindy Had Leukemia, But Her Nosebleeds Were a Sign of Something Far More Rare
January 30, 2020
Ambassador Stories
There’s a New Superhero in Town
January 22, 2020
Ambassador Stories
‘Your Choices Are Going to Dramatically Affect Your Child’s Life’
January 9, 2020
Ambassador Stories
Every Bruise Could Be Deadly for This Adventure-Lover With the Rare Condition ITP
December 12, 2019
Ambassador Stories
What Is a Natural History Study, and Why Is It Important?
November 14, 2019
Explainers
She Stumbled Onto Her Father’s Diagnosis While Studying PSP in Class
October 10, 2019
Ambassador Stories
Why Is Drug Development for Rare Diseases So Challenging?
September 26, 2019
Explainers
This Mom With CIDP Is Fighting for Answers
September 12, 2019
Ambassador Stories
Finding Joy and Community in the Midst of a Sanfilippo Diagnosis
August 8, 2019
Ambassador Stories
This Mom of a 7-year-old With Hunter Syndrome Is Fighting for Her Family
July 18, 2019
Ambassador Stories
What Is a Research Consent?
March 4, 2019
Explainers
How AllStripes Keeps Your Data Private and Secure
October 25, 2018
Explainers
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