Our upcoming events will bring together families affected by PDE to share their experiences and support one another. We will also provide opportunities for families to engage with the research community, fostering a deeper understanding of this rare disease.
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We are excited to announce the launch of our webinar series, where experts in the field will delve into cutting-edge research and advancements in PDE.
At CurePDE, we are dedicated to uniting families and researchers to create a thriving community and advance knowledge about Pyridoxine-Dependent Epilepsy (PDE).
We look forward to creating a vibrant and supportive community through our upcoming events, and we encourage you to stay tuned for updates on our website and social media channels. Together, we can make a difference in the lives of those impacted by PDE.
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For researchers and healthcare professionals, these events will be an invaluable opportunity to exchange ideas, share the latest research findings, and work towards finding new treatments and ultimately a cure for PDE.
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Big news, everyone! We’re putting together the very first face-to-face meet-up for the PDE community – that’s us, the researchers, advocates, and all you amazing families dealing with Pyridoxine-Dependent Epilepsy. This get-together is happening on October 5th-6th in Dallas, TX. It’s going to be a great chance for all of us to connect, share stories, and chat about how we can push forward in our fight against PDE.
register interest HERE
First In-Person PDE Community Meeting in Dallas, TX!
Hi all! We are hosting our first community get together to foster a sense of collaboration between us as families as we shape CurePDE. Feel free to come with ideas or projects you want to take on.
Community Webinar in February
February 22nd 12 pm EST
We spent the time to plan our family retreat for October 2024.
Link to webinar here.
register interest HERE
March 2024 Webinar- Family
Retreat Planning
Jen talked to us about calculating diet and protein calculations for kids with PDE.
Link to webinar here.
register interest HERE
April 2024 Webinar- Community Webinar on Diet for PDE
Dr. Sid Gospe talks to us about the different types of PDE.
Link to webinar here.
register interest HERE
May 2024 Webinar- Scientific
Webinar with Dr. Sid Gospe
Connie spent time talking to us about common health conditions in kids with PDE.
Link to webinar here.
register interest HERE
June 2024 Webinar- Common health conditions family webinar
Leah talks to us about their journey with PDE and her work with various advocacy groups.
Link to webinar here.
register interest HERE
July 2024 Webinar- Family advocacy and PDE Journey
Our blog is a warm and welcoming space where families touched by PDE can freely share their unique journeys, experiences, and triumphs, believing that every story holds the power to inspire, educate, and unite.
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Overview
Welcome to CurePDE - we are a family that wants to help other families understand PDE through connection and education. If you're a family member seeking answers about this rare disease, you're in the right place. Let's begin by unraveling the fundamentals of PDE to empower you with knowledge and hope. We are also always looking for contributors and feedback. If you are a researcher, student, or just interested in PDE, please feel free to submit content to our site. This information was last updated September 20th, 2023 and is based on the references sited.
What is Pyridoxine-Dependent Epilepsy (PDE)?
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