Connecting Families with PURA-Experienced Clinicians
One of the most common questions we hear from new families is: “How can we find doctors who are familiar with PURA Syndrome?” To help answer that, we’ve been building a Clinician Directory — a growing list of healthcare providers who have experience treating multiple individuals with PURA Syndrome and are experts in their respective specialties.
This directory serves a dual purpose:
✔️ Helping families connect with knowledgeable providers
✔️ Enabling clinicians to connect with one another to improve care and advance research
📍 You can find the Clinician Directory in the Resources section of our website. If you know of a clinician who should be added to the directory, please let us know by contacting us at president@pura-syndrome.org.
Get Involved in PURA Research
The PURA Syndrome Foundation encourages all PURA caregivers and individuals to consider participating in research studies as they become available. We currently have two open research opportunities. While the Foundation is not always affiliated with or sponsoring these studies, we share them with the hope that participation will contribute to better understanding, care, and outcomes for our children and community.
🔍 To explore current opportunities, click here. Your participation can help drive progress and make a lasting impact!
The PURA Syndrome Foundation Needs You!
The PURA Syndrome Foundation is a volunteer-based organization, which means we rely on the time, talents, and generosity of people like you to help us achieve our mission and reach our goals. As our community continues to grow, so does the need for many hands and open hearts to support our efforts — from event planning and fundraising to outreach and advocacy. If you’re able to help, or if you know someone who might be interested in getting involved, we’d love to hear from you!
👉 Please fill out the volunteer form on our website or email us directly at volunteer@pura-syndrome.org