People who manage rare and serious illnesses might – or might not – be thinking about hitting the road thanks to COVID-19 vac…
Fear of Needles Is a Sticking Point
Get tips for overcoming “trypanophobia” so health care visits go smoothly.
A 50-Year Wait
Sabine Pitschula knew she was sick, but it took decades to uncover the cause: primary immunodeficiency.
Next Stop, College
Patients offer advice for graduating high school students about managing a health condition in a university environment.
Mindfulness in Action
It can be tough to adjust to life with a serious health problem or a rare disease. Dr. Sarah Gulick helps patients enjoy life…
Be a Mama Bear and Other Advice for Moms
Patient advocates wish a Happy Mother’s Day to the rare disease community.
Nurses Week 2021
We celebrate a profession so essential in health care, it’s often called “the glue” in a patient’s health care experience.
The Philadelphia Inquirer, one of the leading newspapers in the United States, takes a close look at Uplifting Athletes and t…
Explainer: What Is Plasma?
Protein-rich blood component helps keep us healthy and can be donated to create medicines for others.
Learn to Advocate for Yourself
Be confident, voice your opinion, be firm and be positive, experts tell patients living with rare and serious diseases.
Solving Medical Mysteries
Germany’s “Dr. House” and other experts say artificial intelligence can help diagnose rare disease patients.