Day 2: Knowledge is Power

by PURA Syndrome Foundation | Oct 11, 2024 | Awareness, News

Here are some basic resources to share with your family and community to increase awareness! PURA 101 page on the Foundation Website: About PURA Syndrome PDF:

Day 1: Ideas for PURA Syndrome Awareness Cards/Gift Bags

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: Awareness Card We have a parent willing to edit the template for parents and...

October 23, 2024: 10th Anniversary of the Discovery of PURA Syndrome!

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...

We’ve Joined the Rare Epilepsy Network

by PURA Syndrome Foundation | Jun 10, 2024 | Awareness, Resources

We’re excited to share that we’ve joined the Rare Epilepsy Network, a consortium of rare disorders working together on epilepsy research, advocacy and drug development.We hope this partnership will help connect our community with the latest research in...

Raising Awareness for Rare Disease Day

by Eva Kittay | Feb 29, 2024 | Awareness

Today we are raising awareness of rare conditions such as the one my daughter Sesha has. It is PURA Syndrome, and it is a one-gene variant that has profound effects. When we recognized that something was not right with our beautiful 4-month-old baby and learned that...

Today is World Rare Disease Day!

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...