Video: How to Find the Right Diagnosis
Rare diseases are often difficult to diagnose. We asked several patients for advice.
Getting a Handle on Hemophilia
New global data reveals the bleeding disorder is more prevalent than previously thought, according to the World Federation of…
Video: Painting the Patient Journey
What was life like before diagnosis? CIDP patient Rohit picks up a brush to explain.
Forty Years of Knowing How
Replacing C1-INH plasma protein gives a rare disease a longed-for treatment.
Newborn Screenings for Immune Deficiency
Advocates reach a milestone in the United States, press on around the globe to save lives.
A Family’s Fight for Access
Ten years later, the Bartko family reflects on finding the right treatment and stepping forward to help others do the same.
When Doctors Become Detectives
The Undiagnosed Diseases Network seeks answers for patients with rare conditions.
Jeffrey's Parents Did Something
Film recalls a son lost to primary immunodeficiency and the legacy built in his name.
From the Swiss Mountains to the Adriatic Sea
Meet an Alpha 1 patient who advocates for others with the rare disease
Listen: Growing Up with Sickle Cell Disease
On our new podcast episode, a Sickle Cell Disease patient discusses the challenges of her transition to adulthood.