Video: Raising Kids and Managing a Rare Disease
Our patients share what it’s like to be a parent living with a rare condition.
Growing in Germany to Meet Demand
Biotech CSL Behring unveils expansion plans in Marburg.
Forty Years of Knowing How
Replacing C1-INH plasma protein gives a rare disease a longed-for treatment.
Video: How to Tell Teachers About a Rare Disease
One mom's tips for ensuring a child's condition is managed in the classroom.
Video: How to Bring Medication on Vacation
We asked patients for advice on managing their rare disease while traveling.
Video: Why My Rare Disease Doesn't Define Me
Patients on why having a rare condition is only part of their lives.
Turning an HAE Walk Into a Pilgrimage
Following the “Camino” in Spain, walkers will raise awareness about hereditary angioe…
Revisiting HAE Documentary ‘Special Blood’
Director and HAE patient Natalie Metzger on putting faces to the rare disease.
Bringing Rare Disease Patients Together
Patient advocates share stories to empower others living with similar conditions.
Is Music Therapy a Prescription for Rare Diseases?
For some patients, rhythm and beats can complement hospitals and medication.
VIDEO: What Kids Need to Know
See Machelle’s Promising Tips for helping a child be their own rare disease advocate.
8 Patients Share Songs That Inspire
From rock to hip-hop to show tunes, all genres make the playlist.