We invite you to help us celebrate the 5th Birthday of PURA Syndrome! In October of 2014, PURA Syndrome was officially identified and families from around the world began to connect and take action. 

Since then, more than 325 people with PURA syndrome have been identified globally. We have families in 32 different countries, speaking many different languages. As a result, the PURA Syndrome Foundation created new educational materials and translated materials into languages most commonly spoken by our families around the world.  We held our 4th annual global conference this year in Boston, MA, bringing together families, members of our global research network, and clinicians.

The Foundation has made critical investments in research and continues to support our researchers with the Global Research Network. In addition, the completion of our long-awaited Global Patient Registry is just around the corner which will provide longitudinal research opportunities and highlight critical areas for continued research.

As we celebrate the 5th Birthday of PURA Syndrome, we ask that you help us meet our end-of-year goals! We are hoping to raise $15000 by the end of 2019. We also have an anonymous donor willing to donate $5000 if five individuals start campaigns and raise $500 each. Starting your own personal fundraiser is easy and quick. Click HERE to start. Once you have customized your campaign page, you can share it with friends and family via text, email, and social media. If you have any questions about starting a personal campaign, please do not hesitate to reach out to Amanda Shanks at a.shanks@pura-syndrome.org.

Thank you for your generosity! The kindness of our donors allows us to continue to serve our families all over the world!
 

The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .