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/
A Rare Collection - Remember Who You Are
Effisode - Find Your Fairy Godmother
Episode 138 - When Your Child is Facing the Most Severe Form of Human Epilepsy You fight Until the Death - Literally - Chelsea's Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam
Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals
Effisode - Guilt - Ain't Nobody Got Time for That
The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy
A Rare Collection - Up At Night
Effisode - RARE Entrepreneur Bootcamp Warriors
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease
The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances Garber
Effisode - I Don't Like That
Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents
Effisode - Gimme a Break, Spring Break
A Rare Collection - Penny For Your Thoughts
Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins
Effisode - A Perfect Day for a Walk
Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop
Effisode - Grocery Store Answers
Create your
podcast in
minutes
It is Free
The Modern West
Every L Podcast
The Empty Rooms of Gorski Manor
Things Fell Apart
Uncanny
Jim Harold’s Campfire