The New Diagnosis Shows
Experts find pros and cons to TV shows crowdsourcing for medical answers.
Getting a Handle on Hemophilia
New global data reveals the bleeding disorder is more prevalent than previously thoug…
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 l…
A Family’s Fight for Access
Ten years later, the Bartko family reflects on finding the right treatment and steppi…
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…
Emily’s Story: Access to Care Changes a Life
Video: Catching up with one patient 10 years after her family advocated for access.
Revisiting HAE Documentary ‘Special Blood’
Director and HAE patient Natalie Metzger on putting faces to the rare disease.