PURA Family Support
You are not alone in this journey! Our community grows every year and we want to do whatever we can to support one and other along the way.
There are over 478 diagnosed cases of PURA syndrome worldwide living in 47 different countries. As each year passes, the number of diagnosed cases of PURA syndrome is increasing. Our need for research and support grows with that. Children and their families are located across the globe… in countries including Argentina, Australia, Azerbaijan, Brazil, Canada, Czech Republic, Denmark, Finland, France, Germany, Ireland, Israel, Italy, Malaysia, New Zealand, Poland, the Netherlands, Serbia, Singapore, Spain, Switzerland, the United Kingdom and the United States…and yet have come together to support one another.
Below are a few of the ways we offer our families support. These, along with our Ambassador program and Annual Conference, are ways for us to connect on a regular basis. Our resources page also offers some ideas, however, if there is something else you are looking for, please reach out to families@pura–syndrome.org.
Meet Ups
PURA Family and Friends are invited to join us for our upcoming meet-ups.
See the dates and times (with time zones) below, zoom links and more information coming soon!
(Please sign-up for our newsletter to ensure you receive our email updates.)
If you have any questions or would like to host a meet up, please contact families@pura-syndrome.org.
Parents of PURA Syndrome (POPS)
Parents of PURA Syndrome (POPS) is a Facebook community, administered by the parents, exclusive for parents of PURA patients, where they are able to socially connect and share their experiences. This site is kept private to primary caregivers only so they can talk more openly and discuss issues that are sensitive or challenging.
Are you a PURA Sibling?
We are interested in finding ways to support you as a PURA Sibling.
Visit our Siblings page by clicking the link below!
Do you need help? Support?
Don’t hesitate to reach out!
We are here to help you with whatever we can. Please click the link below to email us!