by PURA Syndrome Foundation | Jun 10, 2024 | News
We are pleased to announce the release of our 2023 Annual Report! We are grateful for each of you who continue to support us in furthering our mission to drive research, raise awareness in the general community, as well as connect, educate, serve and empower families...
by PURA Syndrome Foundation | Feb 29, 2024 | Awareness, News
Today is World Rare Disease Day! Today is dedicated to raising awareness among the general public and key decision-makers about rare diseases and disorders and their impact on patient’s lives. World Rare Disease Day gives a public and social platform for rare...
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...
