by PURA Syndrome Foundation | Mar 20, 2024 | Annual Conference
This year’s conference will be special in so many ways. One way you can participate is to feature your PURAPerfect Child or your PURAPerfect Relative in the conference program and online! We are now offering families and friends the ability to purchase program...
by PURA Syndrome Foundation | Jan 15, 2024 | Annual Conference, News
We are in need of sponsors to support our annual conference! In supporting this conference, you provide our global medical team the chance to come together and make plans for future research to benefit PURA syndrome patients. Funds will go directly to funding our...
by PURA Syndrome Foundation | Jan 14, 2024 | Annual Conference, News
Register now for the PURA Syndrome Conference, an event taking place June 21-23, 2024. Join researchers, experts and our PURA community for in-depth sessions that will focus on: Research and studies about PURA Parent Discussions PURA Community Social Time And so much...
by PURA Syndrome Foundation | Oct 24, 2023 | Annual Conference
We are excited to announce that our 2024 PURA Syndrome Conference will take place June 21-23, 2024 in Chicago, IL, USA. Please stay tuned for more details including hotel blocks and information about the Abilities Expo happening nearby on the same weekend!...
by Dominic Spadafore | Mar 7, 2020 | Annual Conference
nIt is our sad duty to inform you, our families and our community, that we as a board have taken the unfortunate decision to suspend this years in-person PURA syndrome conference.n nThis decision has been very difficult. And it has been discussed extensively. We are...
by Dominic Spadafore | Jul 2, 2019 | Annual Conference
n Dear PURA Family:nnnIt was a wonderful time seeing you in Boston and I’m so glad that you were able to make it there.n nIn all, 102 people attended, representing 6 countries!n nWe got a lot of research updates and had some great conversations about ourselves:...
