by PURA Syndrome Foundation | Oct 10, 2024 | Awareness, News
Whether your child is school aged or beyond, there are ways to spread awareness to their community and peers about PURA Syndrome! Here are some ideas and some language to get you started: PURA Syndrome Awareness Cards PURA Syndrome Awareness Cards may be shared with...
by PURA Syndrome Foundation | Oct 10, 2024 | News, Newsletter
Welcome, Nancy Boccia We welcomed Nancy Boccia to the board earlier this year! She is a familiar face as she has helped organize our PURA Conferences since 2021. We are so grateful to have her insight and contributions to the PURA Community so far. Enjoy reading her...
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...
