Rare & Mighty: Giving Tuesday & End of Year Challenge

In this season of giving, we’re reminded of the incredible power of this community – families, friends, and supporters like you who make hope possible for those living with PURA Syndrome. Your continued support has already made such a difference in the lives of families across the world. With your help this Giving Tuesday, we can reach even more people, share more stories, and bring more visibility to this rare and mighty community.

Donations can be made to our Together for PURA 2026 campaign by clicking the link below or texting PURA2026 to 53-555. Help us work towards our goal of $300,000 to support critical research, empower families, and strengthen advocacy efforts worldwide. Thank you for being such an important part of this journey.

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Every breakthrough begins with data.

For a rare condition like PURA Syndrome, every family’s experience helps researchers better understand the condition, reveal meaningful outcomes, identify biomarkers, and prepare for future clinical trials. With only a small number of identified individuals worldwide, every participant matters.

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PURA Syndrome Foundation Announces $247,000 in Research Grants — the Largest Investment in the Foundation’s History

CLICK HERE TO READ MORE

2026 Conference Videos Available

Conference Videos are now available on the Schedule page of our Conference Website.

VISIT OUR CONFERENCE WEBSITE

Our mission is to support and drive research, raise public awareness and connect, educate, serve, and empower families impacted by PURA Syndrome.

GrandPOPS

Are you a PURA grandparent? Click the link below to access grandparent resources and to join our grandparent community!

GrandPOPS Information

PURA Sibling Outreach

Are you a PURA sibling? Click the link below to access sibling resources and to join our sibling community!

PURA Siblings Resources

SAVE THE DATES FOR THE 2027 PURA SYNDROME CONFERENCE

JUNE 25 – 27, 2027 • SAN DIEGO, CALIFORNIA, USA

VISIT WWW.PURACONFERENCE.ORG

What is PURA Syndrome?

PURA Syndrome is a rare genetic disorder that affects neurodevelopment. It was first described in medical literature in October of 2014. PURA syndrome arises when there is a genetic alteration affecting one of a person’s two copies of the PURA gene. The defect can be a single letter spelling change within the gene, a small insertion or deletion within the gene, or even a larger deletion removing one whole copy of the gene (and potentially many neighbouring genes as well).

PURA 101