by PURA Syndrome Foundation | Feb 9, 2025 | Awareness, News
Rare Disease Day is 19 days away! We’d like to share this story about how a PURA family is raising awareness for PURA Syndrome by lobbying their state legislature for better healthcare. Do you have a story to share? Put it in the comments below! Interested in joining...
by PURA Syndrome Foundation | Feb 1, 2025 | Awareness, News
In less than five weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. Rare disease day is dedicated to raising awareness among the general public and key decision-makers...
by PURA Syndrome Foundation | Jan 30, 2025 | Awareness, Research, Resources
We are happy to announce our partnership with the University of Pennsylvania’s Orphan Disease Center JumpStart Program! As part of their Genetic Counseling Student Exchange program we will have a student intern starting in February to work on a four month project with...
by PURA Syndrome Foundation | Jan 14, 2025 | 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 14, 2025 | 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, 2025 | News, Together for PURA 2024-25
We have some exciting updates for you: In December, we announced that a PURA family has generously offered to match donations up to $100,000 for our Together for PURA campaign. This is an amazing opportunity to reach our goal of $250,000 by June 2025. Since the match...
by PURA Syndrome Foundation | Jan 12, 2025 | Annual Conference, News
Register now for the PURA Syndrome Conference, an event taking place June 27-29, 2025. 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 | Dec 23, 2024 | News
by PURA Syndrome Foundation | Dec 20, 2024 | News, Together for PURA 2024-25
It is with great excitement and appreciation that we announce that a PURA family has come forward and offered to match donations up to $100,000 for our Together for PURA Campaign! Every donation to our Together for PURA Campaign made through Rare Disease Day, February...
by PURA Syndrome Foundation | Dec 3, 2024 | News
On this international day of giving, we want to express our gratitude for your continued support of the PURA Syndrome Foundation. If you would like to make a donation this Giving Tuesday, you may do so by following this url: https://givebutter.com/c/pura2024 Please...
