ONCE UPON A GENE - EPISODE 223

Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio

Ilene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of epilepsy organizations banding together, sharing research efforts, and improving the lives of rare epilepsy patients and families. They're here to share about the inception and mission of REN and the resources available through membership.

EPISODE HIGHLIGHTS

What gap did establishing REN fill?

REN was born out of the need for smaller organizations to have more information about constituents and their experiences and not being able to secure the funds to do that for themselves. Ten rare epilepsy organizations came together and were awarded funding to create the first rare epilepsy network registry that had the capacity to collect information across all rare epilepsies.

How do you engage, continue to grow and support your community?

We host monthly meetings and we bring in researchers, partners, speakers and other organizations to bring information to our members that they can use. Most recently we had panelists come in to talk about mortality, which is a hard topic to discuss, but our members are dealing with this in their own communities. The panel shared resources and best practices and we're assembling a collaborative working group to continue making these resources available to the network. We also have a list serve which includes all REN members where anyone can ask questions. The discussions that happen as a result are so valuable and helpful. We have a referral network so we can refer researchers, academics, clinicians and other industry professionals to the organizational partners, support groups and patient organizations they can engage in. We stay connected with these communities so we can connect the dots and match-make and help everyone find their tribe. Our monthly newsletter includes all the latest REN news, we share resources, highlight organizations and organization leaders.

What are the future goals for REN?

We pulse our members to see what's most important to them and two years ago, we focused on multi-disciplinary clinics because we heard from members that there aren't enough of them. We took a deep-dive into multi-disciplinary clinics and organized meetings at the Annual American Epilepsy Society Conference to bring together 100 researchers, clinicians and patient-advisory group leaders to work on the challenge. This year we're working on clustering to determine where there's synergy between epilepsy commonalities. 

Why should a patient organization or support group join REN?

There's no cost to be a REN member and you can engage at a pace that works for you, whether you serve on a committee and be active in work groups, or you can just watch, learn and share information as it's appropriate. 

What resources do you wish current REN members better utilized?

For current members, I'd like to see more engagement on social media using the hashtag #rareepilepsies in all posts. If any syndrome or disorder has epilepsy as a symptoms, using the hashtag #rareepilepsies can help build public and professional awareness. Our monthly member meetings are very actively engaged with 50+ organization leaders attending and sharing insights, so if you aren't coming to those meetings, you're missing out. 

LINKS AND RESOURCES MENTIONED

ONCE UPON A GENE - EPISODE 207 - Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD

https://effieparks.com/podcast/episode-207-breaking-barriers-in-brain-health-with-tracy-dixon-salazar-phd

LGS Foundation

https://www.lgsfoundation.org/

Hope for Hypothalamic Hamartomas

https://www.hopeforhh.org/

American Epilepsy Society

https://aesnet.org/

Epilepsy Foundation 

https://www.epilepsy.com/

Undiagnosed Disease Network 

https://undiagnosed.hms.harvard.edu/

Courageous Parents Network

https://courageousparentsnetwork.org/