The majority of REN member organizations were created by volunteers, and volunteers are their engine! This Volunteer Appreciation Week, we want to take a moment to thank those volunteers who have genuinely been changing the odds for those with rare epilepsies and inspiring others! They are heroes!

Joining REN connects you to 150+ leaders of communities affected by rare epilepsy who know there is very little training to be an advocacy leader. Visit www.rareepilepsynetwork.org/members-part... to check out our members and partners and join.

On this Rare Disease Day we share the story of Charlotte's epilepsy journey with v-ATPase.
To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org

Rare Disease Day is coming up on Friday! The Rare Epilepsy Network is so proud to have so many advocates out there celebrating this week in their countries, cities, states, and capitals! Please celebrate with us by spreading the word!

This week is Seizure Action Plan Awareness Week! Don't delay – take control of your health today by creating your Seizure Action Plan! Download your SAP today, available in seven different languages: sprout.link/epilepsyfdn?...

Today we Celebrate International Epilepsy Day & The Rare Epilepsies! This day encourages everyone, regardless of how they are affected by epilepsy, to advocate for global human rights for people living with epilepsy. www.rareepilepsynetwork.org

We’re thrilled to introduce this year’s @ODC_UPenn's Genetic Counseling Student Exchange (GCSX) participant from the Penn Medicine Genetic Counseling Program. Over the next 10 weeks, they'll be working on advocacy projects for REN @odc-upenn.bsky.social

TODAY, 3pm EST "Growing Together: Navigating the Life Stage Checklist for Families." Register here:
us02web.zoom.us/webinar/regi...

Join us Feb 6, 2025 2pm CST for an empowering and informative webinar, Growing Together: Navigating the Life Stage Checklist for Families.

us02web.zoom.us/webinar/regi...

Check out our upcoming event, Growing Together: Navigating the Life Stage Checklist for Families.
us02web.zoom.us/webinar/regi...

The Curse of Stigma is more than a documentary! The stories in the film empower people to speak out, to tell others that epilepsy is treatable, and that there should be no shame. Watch The Curse of Stigma Film at: thecurseofstigma.org

Join our partners at AGENDA (Alliance for Genetic Etiologies in NeuroDevelopmental Disorders and Autism) at their upcoming meeting. AGENDA is lucky enough to have Wendy Chung from BCH speak on Newborn Screening.
us06web.zoom.us/meeting/regi...

We are thrilled to share that DEE-P Connections, in partnership with the Rare Epilepsy Network, held a DEE Patient Listening session on November 22nd, 2024 with members of the @fda.gov.