by PURA Syndrome Foundation | Aug 22, 2024 | Research
Why are natural history studies important for rare diseases? How do I include my PURA perfect individual in the PURA Syndrome Global Patient Registry? Find the answers to these important questions and more by watching Dr. David Hunt present at our most recent PURA...
by PURA Syndrome Foundation | Jul 18, 2024 | Together for PURA 2024
It is now easy to search 24,000+ companies to see if your employer has an employee gift matching program and to submit a request to match your donation to the PURA Syndrome Foundation. To start the process all you need to do is select your employer when making a...
by PURA Syndrome Foundation | Jul 15, 2024 | Together for PURA 2024
Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research, as well as serve and empower families impacted by PURA Syndrome? WE can do this, and you can help!...
by PURA Syndrome Foundation | Jul 11, 2024 | Research
One of the big topics at the Annual Conference was our PURA Patient Registry. This is so vital to our understanding of PURA Syndrome and we need as many participants as possible. If you’d like to hear the latest update that Dr. Hunt gave at our conference, go...
by PURA Syndrome Foundation | Jul 10, 2024 | Annual Conference
We are so grateful members of our Global Research Network, Dr. David Hunt (UK) and Dr. Robert Janowski (Germany), were able to join us in Chicago for our PURA Syndrome Conference. If you missed any of the sessions, they are currently available at the following link:...
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 29, 2024 | Annual Conference
2024 Conference videos are now available! Go to: www.puraconference.org/schedule
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...
