by PURA Syndrome Foundation | Jun 22, 2024 | Annual Conference, News
We had so many wonderful speakers today and are so grateful for their insights! #purasyndrome #puraconference2024 #purasyndromeconference...
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...
