by PURA Syndrome Foundation | Feb 8, 2024 | Awareness, News
In a few weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. When an individual is impacted by a rare disease, awareness is critical in increasing support, raising funds,...
by PURA Syndrome Foundation | Jan 15, 2024 | Annual Conference, News
We are in need of sponsors to support our annual conference! In supporting this conference, you provide our global medical team the chance to come together and make plans for future research to benefit PURA syndrome patients. Funds will go directly to funding our...
by PURA Syndrome Foundation | Jan 14, 2024 | Annual Conference, News
Register now for the PURA Syndrome Conference, an event taking place June 21-23, 2024. 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...
by PURA Syndrome Foundation | Nov 27, 2023 | News
It has been a wonderful year, and on this international day of giving, we want to express our gratitude for your continued support of the PURA Syndrome Foundation. Every donation helps further our mission to support research of, raise awareness for, and serve and...
by PURA Syndrome Foundation | Nov 25, 2023 | News
As you are doing your online shopping, shop for a cause! A portion of all proceeds from our Zazzle store benefits the PURA Syndrome Foundation. #purasyndrome Here’s the link: https://www.zazzle.com/store/purasyndrome
by PURA Syndrome Foundation | Nov 19, 2023 | News, Newsletter
Our research liaison Jim Lagowski and board member Melissa Vaught attended the Global Genes conference in September. They were able to network with other Rare Disease Organizations and brought back a lot of insights that will help the PURA Syndrome Foundation with...
