Our Stories

Each one of us has a unique story, one that brings us to where we are today.

As part of our 2021 conference, we are collecting the moments, memories and feelings that make us part of this extraordinary community. We invite you to share a piece of your story with us. It’s simple, and all you need is a desktop or mobile device with a camera and microphone.

Stories will appear on our website and may be used as part of the conference. These stories are our inspiration and our power and we thank you for participation!

Share Your Story - Families/Caregivers Share Your Story - Researchers/Clinicians

Family Members

We asked our PURA Community to respond to the following questions:

Please share the story of when you first heard the diagnosis of PURA Syndrome.
How have the stories of other PURA families impacted you?
What, in the PURA community, gives you hope?
What is your biggest struggle and biggest joy?

Researchers and Clinicians

We asked our Researchers and Clinicians to respond to the following questions:

How have patient and caregiver stories impacted you personally?
What impacts your research the most?
What gives you hope?