Newly Diagnosed
Welcome to the PURA Syndrome Foundation, we are happy you have found our community. We know a new diagnosis can be very overwhelming so we are here to support and help you through this journey. Together we are stronger!
Step 1: Learn about PURA Syndrome
There is a lot of information about PURA Syndrome on this website. Begin by visiting the Understanding PURA Syndrome section.
Step 2: Connect with our Community
Our community understands what you are going through! Connect with your PURA family by reaching out to the ambassador for your region, connecting to our Parents of PURA Syndrome (POPS) group on Facebook, signing up for our newsletter and joining one of our meet ups.
Step 3: Educate Your Family and Friends
PURA Syndrome isn’t the easiest thing to describe to family and friends. Here, you will find resources that will help you explain things in a simple, consise manner. For those who want to dig deeper, send them to our research page!
Step 4: Join Our Patient Registry
PURA Syndrome was first described in 2014, so researchers are still learning about it. We ask every PURA family to join the PURA Syndrome Patient Registry. The information you share helps researchers understand PURA Syndrome and prepare for future clinical trials. The registry is also how we will contact you about research studies and clinical trials your family may be able to join.
Step 5: Raise Awareness
The more people that know about PURA Syndrome the better! Help us spread awareness about this rare syndrome!
After my son’s diagnosis, there were times when I felt like I couldn’t breathe. The PURA Syndrome Foundation offered resources and a community of parents just like me and for that I will always be grateful.
When you receive a diagnosis you are beginning a new chapter of your life. To feel like you are doing this not just with your own family, but with a worldwide family makes anything seem possible. Each person diagnosed is a key piece of the puzzle to the PURA Community. I am happy to be a part of it!
I absolutely love my brother and all that he has brought to my life. At times though, it is hard having a sibling with special needs and I appreciate the efforts to connect siblings during conferences and meet ups. It helps to know there are kids like me with the same joys and challenges that come with having a PURA sibling.
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Join our PURA Community and get access to our newsletters, current events and more!
You can contact us at any time!
We are here to help you with whatever we can.
Please click the link below to email us.