Pura Syndrome Conference 2022 – Together We Are Stronger

About the Conference

June 10-13 & 18, 2022
The virtual conference takes place over a long weekend and culminates the next weekend with our Final Elements panel. It will consist of live and recorded sessions to allow you the opportunity to view and participate in as many sessions as possible, and at your convenience. Much will be defined in real time with live Q&A sessions and breakout opportunities. It will be active and participatory, but most of all it will be inspiring and educational. Keep checking back for updates!
Learn MoreRSVP to Participate


Each day will offer new and exciting opportunities for our PURA family to connect with clinicians, researchers and other parents and caregivers.

Who Should Participate

This event is open to anyone who has a connection to someone with PURA Syndrome, including family, caregivers, friends, therapists, clinicians, researchers and scientists.

Dedicate a Poem

Together we are Stronger is the theme for this year’s conference. In honor of this, we would love for all our community to be part of this special occasion by sharing your own poem in which you express the meaning of these words to you. Some of the submitted poems will be chosen to be read at this year’s opening and they will all be available on our website. Thank you very much and let’s get started! Welcome to our virtual PURA Syndrome Conference 2022. Remember – Together we are Stronger.

Together We Are Stronger
By Caroline Thorpe

Together our lives take place,
Overwhelming adventures we go on,
Glorious occasions give us strength,
Experiences which will always be with us are always taking place,
Transforming our lives into a unique shape,
Helping us grow and appreciating new aspects of the world,
Every life story does,
Real life moments we share.

Whispering concerns become part of our lives,
Evolving situations accompany us on our journey.

Authenticity describes their amazing uniqueness,
Reflection is a new skill we master,
Expressions gain a new meaning and contrasting emotions are a part of us.

Smiles are magical in our world,
Trying, we never stop,
Relationships are built and grow around us,
Overlooking the concerns we used to have and focusing on the light around us,
Never ever giving up while,
Gratitude is gaining a new sense of value to life,
Enjoying those little but significant moments in life,
Realising everything is just as it should be.

Countdown to Conference