Together for PURA Online Auction

by PURA Syndrome Foundation | Jan 14, 2025 | News, Together for PURA 2024-25

We have some exciting updates for you: In December, we announced that a PURA family has generously offered to match donations up to $100,000 for our Together for PURA campaign. This is an amazing opportunity to reach our goal of $250,000 by June 2025. Since the match...

2025 PURA Conference Registration Open!

by PURA Syndrome Foundation | Jan 12, 2025 | Annual Conference, News

Register now for the PURA Syndrome Conference, an event taking place June 27-29, 2025. Join researchers, experts and our PURA community for in-depth sessions that will focus on: Research and studies about PURA Parent Discussions PURA Community Social Time And so much...

Happy Holidays 2024

by PURA Syndrome Foundation | Dec 23, 2024 | News

Together for PURA $100,000 Match!

by PURA Syndrome Foundation | Dec 20, 2024 | News, Together for PURA 2024-25

It is with great excitement and appreciation that we announce that a PURA family has come forward and offered to match donations up to $100,000 for our Together for PURA Campaign! Every donation to our Together for PURA Campaign made through Rare Disease Day, February...

Giving Tuesday 2024

by PURA Syndrome Foundation | Dec 3, 2024 | News

On this international day of giving, we want to express our gratitude for your continued support of the PURA Syndrome Foundation. If you would like to make a donation this Giving Tuesday, you may do so by following this url: https://givebutter.com/c/pura2024 Please...

PURA Syndrome Australia Launches Speech/Language Study

by PURA Syndrome Foundation | Nov 26, 2024 | News, Research

Please see below for a research opportunity from PURA Foundation Australia that is open to all PURA families across the globe! PURA Foundation Australia  Just launched – Speech and language research for PURA syndrome ! Researchers are looking for families to be...