Real life stories

Living with rare autoinflammatory diseases can be different for everyone. We have invited patients and their families to share their experiences of living with these conditions. Watch the videos below to find out more.

European Reference Network for Rare Diseases

A Day in a Rare Life

"I'm Rare" - The Experts Perspective

These three medical experts clearly understand the science behind rare autoinflammatory diseases, but their experiences of working with families mean they also understand what it’s like to live with these conditions.

“I’m Rare”

Young people with rare autoinflammatory conditions share what it’s like living with a rare disease. Listen to them talk with their families about daily life, the emotional impact of their condition and the dreams they have for the future. Find out what being rare means to them.








Living with Systemic Juvenile Idiopathic Arthritis

"There were 7 years of hard work, torture and all that. And now we thank God because we have a normal life." Watch Jose Jesus Lucas, and his wife Lucero Marin, describe the ups and downs of their son’s journey with Systemic Juvenile Idiopathic Arthritis.

A minute change in DNA can have big impact

Here’s our current understanding of the science behind the tiny DNA change(s) that lead to rare periodic fevers.

Periodic Fevers

February 2016 - GLDEIM/ACZ885/0059