by PURA Syndrome Foundation | Jul 2, 2024 | News, Together for PURA 2024
This October marks a monumental milestone—10 years since the first papers were published making PURA Syndrome a named condition. As we commemorate a decade of research and community, we invite you to be a part of our journey forward. Commemorating a Decade Since...
by PURA Syndrome Foundation | Jun 27, 2024 | News, Research
NEW RESEARCH A new paper was just published this week by members of our Global Research Network, Guido Rubboli and Katrine M. Johannesen and their colleagues at the University of Copenhagen, on the “differences in manifestations of epilepsy and developmental...
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...
