Monthly Membership Meetings

REN hosts structured monthly meetings that advance organizational goals and deliver strong member value. As a signature program and core membership benefit, these sessions foster education, collaboration, and alignment across the rare epilepsy community. Featuring expert presentations on topics such as ICD coding, drug repurposing, genetic testing, research, and advocacy, the meetings connect diverse voices to share insights, build capacity, and drive collective progress.

Rare Epilepsy Round Up Monthly Newsletter

Each month, REN curates and delivers a trusted “pulse of the rare epilepsy community”—a widely read digital newsletter that consolidates celebrations, grant announcements, research news, conference opportunities, and policy updates from across the field. More than a digest, it uniquely highlights trends shaping rare epilepsy research and care, while spotlighting leaders and organizations driving progress. With its broad reach, the newsletter serves as both a springboard for collaboration and a living record of community impact, ensuring members stay connected, informed, and inspired.

Rare Epilepsy Network Needs Assessment Survey & Registry

REN has been landscaping the Rare Epilepsies since 2019 and each year since. REN onboards 3-5 new members a month. It collects key information for each new member during the onboarding process. Since 2024, all members are invited to participate in a long form survey including valuable insights about each organization’s demographics, research, and advocacy needs. It also collects information about barriers, challenges, needs, and opportunities across research, advocacy, infrastructure, and capacity. Collectively, these insights have helped to inform REN Programs, Services, Work Groups and additional collaborations. 

Key Links Publications:   

Rare Epilepsy Landscape Analysis (RELA) - APPENDIX
Understanding patient advocacy – the Rare Epilepsy Landscape Analysis (RELA)

Rare Epilepsy Landscape Analysis (RELA)
Raring for Change

Education Content & Collateral Development

REN plays a vital role in creating and amplifying educational content that benefits the entire rare epilepsy ecosystem. Working in close partnership with our Member organizations as well as external partners, REN develops high-quality materials—such as toolkits, webinars, guides, and resource sheets—that are produced once but shared widely for maximum reach and impact. Some materials are hosted directly on the REN website, while others are featured on partner platforms, ensuring broad accessibility across communities.

 
Visit resources for: 
Transitions of Care: https://deepconnections.net/2025/02/10/growing-together-navigating-the-life-stage-checklist-for-families/
Everything Genetic Testing (link: ​https://www.rareepilepsynetwork.org/genetictesting) 

Showcasing Members Onsite & Onstage

REN amplifies the visibility and leadership of our members at national conferences, workshops, advisories and more by: ​

• Recommending keynote speakers, panelists, and presenters to ensure the rare epilepsy voice is front and center.

• Coordinating sessions and content tracks that spotlight expertise from across the membership amplifying rare epilepsy information and education.

• Hosting a shared booth at key conferences, providing every member organization a presence — even when they can’t attend in person.

• Deploying “boots-on-the-ground” ambassadors to represent REN, connect with stakeholders, and bring back critical insights to the community.

Information & Referral

​REN serves as a trusted hub connecting families, clinicians, researchers, and industry. Families seek guidance and community; professionals look for information and collaboration; and companies engage on trials, surveys, and advisory initiatives—all reflecting REN’s central role in advancing progress across the rare epilepsy landscape.

Annual Membership Networking Social

REN co-hosts an annual networking social at the American Epilepsy Society meeting, bringing together advocates, clinicians, researchers, industry, and partners to connect, exchange ideas, and spark collaboration—strengthening relationships and advancing collective progress across the rare epilepsy ecosystem

REN Registry

​The REN Registry is now housed at Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) portal. The platform includes not only REN data but also information on over 34 diseases, including Angelman Syndrome, CACNA1A, hnRNP, KIF1A, Kleefstra, LGS, Prader-Willi, Sturge-Weber, and Tuberous Sclerosis, many of which overlap with rare epilepsy.​​​​​​​​​ An interactive dashboard for reviewing data for single or multiple disorders can be found here.