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Coming Soon: Guest Blogs

Selfcare is Healthcare, Part II: Sleep

Self-Care is Healthcare, Part 1

Share Your Colors on Rare Disease Day 2022

Designing Rare Disease Patient-Friendly Clinical Trials

The Challenges of Rare Clinical Trials

The Other Bias in Healthcare

Yet One More Thing to Deal With

Smartphone Caregiver Mental Health Intervention

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?