by PURA Syndrome Foundation | Oct 7, 2024 | News, Newsletter, Research
Patient Registry Update Parents and Caregivers – We Need Your Help to complete at least 100 Patient Registries! Dr. Hunt gave an update at our June Conference as to where we are at with our Global Patient Registry. We currently have 51 completed registries with...
by PURA Syndrome Foundation | Oct 6, 2024 | Advocacy
Epilepsies Action Network brings together parents, siblings, caregivers, and advocates in partnership with doctors, nurses, researchers, and policy makers to raise awareness and increase funding for The Epilepsies to improve the lives of all persons living with this...
by PURA Syndrome Foundation | Sep 30, 2024 | Awareness
Join us in celebrating this special time of year as we commemorate the 10th Anniversary of the Discovery of PURA Syndrome! PURA Syndrome Awareness Day is Wednesday, October 23! Show your support for PURA Syndrome by clicking this link, download the Facebook Frame...
by PURA Syndrome Foundation | Sep 24, 2024 | Siblings
Attention PURA Siblings! You are invited to join us for zoom chats over the next month so we can get to know one another. Please keep an eye our your email for zoom links and if you aren’t yet signed up for our email list, visit purasyndrome.org/siblings to do so....
by PURA Syndrome Foundation | Aug 28, 2024 | Research
Click here for the Registry Checklist
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 2024-25
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 2024-25
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:...
