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/
Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Krabbe Disease with Kasey Feldt
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Finding Strength In Every Step
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
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