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 | Oct 16, 2024 | Awareness, News, Together for PURA 2024-25
At our 2024 Conference, we launched our year-long Together for PURA Campaign, where we embarked on a bold mission to raise $250,000. These funds are important to continue and increase the initiatives of the global PURA Syndrome Foundation. Our top priorities and needs...
by PURA Syndrome Foundation | Jul 18, 2024 | Together for PURA 2024-25
It is now easy to search 24,000+ companies to see if your employer has an employee gift matching program and to submit a request to match your donation to the PURA Syndrome Foundation. To start the process all you need to do is select your employer when making a...
by PURA Syndrome Foundation | Jul 15, 2024 | Together for PURA 2024-25
Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research, as well as serve and empower families impacted by PURA Syndrome? WE can do this, and you can help!...
by PURA Syndrome Foundation | Jul 2, 2024 | News, Together for PURA 2024-25
This October marks a monumental milestone—10 years since the first papers were published making PURA Syndrome a named condition. As we commemorate a decade of research and community, we invite you to be a part of our journey forward. Commemorating a Decade Since...
