Blog

Hear community perspectives on topics ranging from navigating a diagnosis to reflecting on clinical trial experiences.

September 26, 2025
A Letter to Our Community on Giving Tuesday

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CRD Patient Registry: How to Join

Finding Career Motivation in a Rare Disease Diagnosis

My name is Katie Kuhl and I am a junior in high school right now. I am mostly focused on school and am involved in the math team, DECA, pre-med club, student council, and volunteering at my local animal shelter…

Cure Rare Disease Celebrates the Grand Opening of New Laboratory

Researcher Spotlight: Willeke van Roon-Mom

10 Disabled TikTok Creators You Should Follow For a More Inclusive Feed

It's National Disability Awareness Month, and what better way to celebrate than by highlighting some amazing TikTok creators who share their stories and journeys of living with a disability.

Latest Perspectives

February 28, 2022
Cure Rare Disease
Profile: Meet Keith W. Crawford, R.Ph., Ph.D.
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February 22, 2022
Cure Rare Disease
Cure Rare Disease Collaborates With SickKids on Three-Year CRISPR Research Project
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February 17, 2022
Cure Rare Disease
Meet Our New Board Member: Cody Tranbarger
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February 9, 2022
Patricia Szeto
Our Homeschooling Experience
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January 26, 2022
Meet Our New Intern: Shivani Vyas
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December 30, 2021
Our Proudest Press of 2021
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December 29, 2021
Cure Rare Disease
Our Top Blog Posts of 2021
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October 27, 2021
Cure Rare Disease - 3 Years Later
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October 11, 2021
Cure Rare Disease
Findings From Cure Rare Disease's AAV Seropositivity Study
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October 8, 2021
Dawn Jones
What They Don't Tell You About Duchenne
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September 27, 2021
Cure Rare Disease
Q&A with Elijah Stacy, author of “A Small If,” a memoir on living with Duchenne muscular dystrophy
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September 7, 2021
Cure Rare Disease
Amplifying Community Voices on World Duchenne Awareness Day
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August 4, 2021
A Timeline Of The Science Behind Cure Rare Disease
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July 27, 2021
Cure Rare Disease
10 Disabled Twitter Creators You Should Follow For a More Inclusive Feed
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July 21, 2021
Cure Rare Disease
10 Inclusive Children's Books With Disabled Characters
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July 9, 2021
Lydia Safford
Hello, I’m a sibling and I’m here too!
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July 7, 2021
Cure Rare Disease
Aquatic Therapy Guide for Children with Duchenne Muscular Dystrophy
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June 23, 2021
Kati Falger
The precious gift of a rare disease diagnosis
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May 26, 2021
Rick Hamilton
Finding the Perfect Home for All Our Family’s Needs
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May 20, 2021
JeanAnn Bryan
Building a New Future: Our Family’s Floor Plans to a New Accessible Home
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April 20, 2021
Cure Rare Disease
Choosing Gene Therapy: Reflections on Dosing, Before, During and After
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March 25, 2021
Jessica Curran
Taking the Leap of Faith: Tips for before and after a muscle biopsy
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March 1, 2021
Sara Aluffi
My Child in Disguise
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February 28, 2021
Rare Disease Day 2021: Building a Successful Career Despite a Rare Disease
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