This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia
https://pixabay.com/en/family-feet-closeup-blue-baby-boy-1966496/

This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia

Leah Alstin has a rare disease called Friedreich’s ataxia. Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms…

Continue Reading This Mother’s Amazing #showusyourshoes Campaign for Friedreich’s Ataxia
monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community
https://pixabay.com/en/analysis-analytics-business-charts-1841158/

monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community

Scientists aren’t always the best at sharing amongst themselves. But sharing data could mean accelerated research. By making your own data available to scientists you can help contribute to a…

Continue Reading monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community
Got Primary Immunodeficiency? Get Out of Town in July, Teenager!
https://pixabay.com/en/girl-happy-smile-woman-playful-1205254/

Got Primary Immunodeficiency? Get Out of Town in July, Teenager!

Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…

Continue Reading Got Primary Immunodeficiency? Get Out of Town in July, Teenager!
If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation
https://pixabay.com/en/anatomical-anatomy-body-gut-health-2261006/

If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation

Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…

Continue Reading If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation
Thinking Positively While Dealing with Pulmonary Fibrosis (PF)
https://pixabay.com/en/optimistic-beautiful-things-1491087/

Thinking Positively While Dealing with Pulmonary Fibrosis (PF)

Positive Thoughts Kim Frederickson was diagnosed with pulmonary fibrosis (PF) in 2014. She has used her skills as an author to share her story. Her motto is to focus on…

Continue Reading Thinking Positively While Dealing with Pulmonary Fibrosis (PF)
Know Your Medical Vocabulary: Defining Hemiplegia, Hemiparesis and Cerebral Palsy
https://pixabay.com/en/dictionary-words-grammar-abc-390055/

Know Your Medical Vocabulary: Defining Hemiplegia, Hemiparesis and Cerebral Palsy

You know that feeling when someone says a word that you don’t understand? It happens to people all the time. It might be your accountant right before tax time. It…

Continue Reading Know Your Medical Vocabulary: Defining Hemiplegia, Hemiparesis and Cerebral Palsy
From Hospital Room to Football Field: The Amazing Story of One Guillain-Barre Survivor
https://pixabay.com/en/football-field-goal-touchdown-1053511/

From Hospital Room to Football Field: The Amazing Story of One Guillain-Barre Survivor

Inspiration comes from many different places, but the best inspiration usually comes from seeing someone achieve greatness in the face of obstacles. That is exactly what a Navy midshipman by the…

Continue Reading From Hospital Room to Football Field: The Amazing Story of One Guillain-Barre Survivor
Got Sickle Cell Disease? Here’s a Story That Will Make You Smile
https://pixabay.com/en/people-portrait-girl-black-girl-3194027/

Got Sickle Cell Disease? Here’s a Story That Will Make You Smile

Admittedly, I’m no expert when it comes to sickle cell disease, but after reading about an inspirational young woman who is forging on to live—and I mean LIVE—her life, I’d like…

Continue Reading Got Sickle Cell Disease? Here’s a Story That Will Make You Smile
High School Senior With Friedreich’s Ataxia Fulfills Cheerleading Dream
https://pixabay.com/en/cheerleaders-football-college-nfl-654381/

High School Senior With Friedreich’s Ataxia Fulfills Cheerleading Dream

Kiara Trussell thought her dreams of being a cheerleader would never happen. This is partly because Friedreich’s ataxia has made her wheelchair bound. Friedreich’s ataxia is a progressive neurological condition.…

Continue Reading High School Senior With Friedreich’s Ataxia Fulfills Cheerleading Dream
China Set to Publish First Ever National List of Rare Diseases, Paving Way for Drug Development
https://pixabay.com/en/medic-hospital-laboratory-medical-563425/

China Set to Publish First Ever National List of Rare Diseases, Paving Way for Drug Development

The Chinese government is set to publish its first comprehensive list of rare diseases, with the aim to help policymakers improve diagnoses and speed up drug approvals. This comes on…

Continue Reading China Set to Publish First Ever National List of Rare Diseases, Paving Way for Drug Development
Teens with Von Willebrand and Other Bleeding Disorders Take to the Runway
https://pixabay.com/en/fashion-show-fashion-catwalk-model-1746586/

Teens with Von Willebrand and Other Bleeding Disorders Take to the Runway

Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was one of the models for the…

Continue Reading Teens with Von Willebrand and Other Bleeding Disorders Take to the Runway
The Importance of Storytelling: A Journalist’s View of Trigeminal Neuraliga
https://pixabay.com/en/vintage-typewriter-write-new-york-1170654/

The Importance of Storytelling: A Journalist’s View of Trigeminal Neuraliga

Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the years, she has interviewed people…

Continue Reading The Importance of Storytelling: A Journalist’s View of Trigeminal Neuraliga