by PURA Syndrome Foundation | May 28, 2025 | Research
Attention PURA Parents and Caregivers! Do you have an MRI scan of your PURA perfect individual that you are willing to share for research purposes? Dr. Jeff Waugh, a pediatric neurologist and neuroscientist at UT Southwestern in Texas, USA, is conducting a Volumetrics...
by PURA Syndrome Foundation | May 10, 2025 | Annual Conference
Save the dates! We are excited to announce that our 2026 PURA Syndrome Conference will take place June 26-28, 2026 in Munich, Germany . More info to come after our 2025 Conference this June in Dallas, TX, USA. We want to offer a special thank you to Tina & Dierk...
by PURA Syndrome Foundation | Apr 29, 2025 | Advocacy, News
U.S. Families and Friends of PURA, please take a moment to ask your elected officials to support and cosponsor the National Plan for Epilepsy! If your elected official is already a sponsor, you will be able to send them a thank-you message instead. Use VoterVoice to...
by PURA Syndrome Foundation | Mar 20, 2025 | News, Together for PURA 2024-25
Remember that amazing PURA family that generously offered to match donations up to $100,000 by Rare Disease Day? Well, they were so inspired by everyone’s generosity in getting us to $100,000 that they pledged AN ADDITIONAL $25,000 in matching donations! This...
by PURA Syndrome Foundation | Mar 17, 2025 | News, Together for PURA 2024-25
We have a PURA family connection to American professional basketball player Caitlin Clark’s family, and they generously donated the following signed sports items for us to auction off to benefit our Together for PURA fundraiser: Iowa Hawkeye long-sleeved t-shirt...
by PURA Syndrome Foundation | Mar 7, 2025 | Annual Conference
Hear from the Manning family who attended last year’s PURA Syndrome Conference and why it was such a meaningful experience for them! Save the date for the 2025 PURA Syndrome Conference! June 27-29, 2025 in Dallas, TX Register at puraconference.org #PURASyndrome...
by PURA Syndrome Foundation | Mar 7, 2025 | News, Together for PURA 2024-25
Hooray! We did it! Thanks to your generosity, we made it to over $100,000 on Rare Disease Day, February 28, and will receive a match of $100,000 from an equally as generous PURA family! Our overall goal for the Together for PURA campaign is $250,000, and we will...
by PURA Syndrome Foundation | Feb 26, 2025 | Annual Conference
Hear from the Stafford family who attended last year’s PURA Syndrome Conference and why it was such a meaningful experience for them. From expert talks to heartfelt connections, this event is designed to inform, support, and bring our community together. Stafford...
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...
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