Parenting a Child with a Rare Disease: Isolation

Parenting a Child With a Rare Disease: Fighting for Quality Medical Care

The Trouble With Transportation

The Science of Pharmacogenetics

Attention Must Be Paid

Limits of the Pain Scale

The Freak in the Room

The SCD Community: We Are the World

Introducing...Ehlers-Danlos Syndrome

Kids' Lit: A teaching Tool About Sickle Cell?

It's Time to Listen to Rare Disease on YouTube!

This Missed Opportunity of a Bill

Infusion Centers: Are They the Future of Sickle Cell Crisis Care?

It’s a Tough Time…but It’s Even Tougher for Rare Disease Patients

Online Survey Debuts to Discover Effect of COVID-19 on Rare Disease Patients

First Do No Harm: An Open Letter to Administrators Crafting Policies for Ventilator Allocation

See Me, Not Just My Diagnosis

Why Does My Doctor Have That Look on Her Face?

The Rare Life, Part I

What Stands in the Way of Access to Healthcare for Every Patient?