by PURA Syndrome Foundation | Oct 12, 2024 | Awareness, News
by PURA Syndrome Foundation | Oct 11, 2024 | Awareness, News
Here are some basic resources to share with your family and community to increase awareness! PURA 101 page on the Foundation Website: About PURA Syndrome PDF:
by PURA Syndrome Foundation | Oct 10, 2024 | Awareness, News
Whether your child is school aged or beyond, there are ways to spread awareness to their community and peers about PURA Syndrome! Here are some ideas and some language to get you started: Awareness Card We have a parent willing to edit the template for parents and...
by PURA Syndrome Foundation | Oct 10, 2024 | News, Newsletter
Welcome, Nancy Boccia We welcomed Nancy Boccia to the board earlier this year! She is a familiar face as she has helped organize our PURA Conferences since 2021. We are so grateful to have her insight and contributions to the PURA Community so far. Enjoy reading her...
by PURA Syndrome Foundation | Oct 7, 2024 | News, Newsletter, Research
Patient Registry Update Parents and Caregivers – We Need Your Help to complete at least 100 Patient Registries! Dr. Hunt gave an update at our June Conference as to where we are at with our Global Patient Registry. We currently have 51 completed registries with...
Shqip
العربية
Bosanski
简体中文
Hrvatski
Čeština
Dansk
Nederlands
English
Eesti
Filipino
Suomi
Français
Deutsch
Ελληνικά
Magyar
Italiano
日本語
한국어
Polski
Português
Română
Русский
Српски језик
Slovenčina
Slovenščina
Español
Svenska
Türkçe
Українська
Tiếng Việt