Happy summer hope everyone is easing into warmer weather and lessening of covid restrictions. Save the date for our next REN Membership meeting on July 26. Our informal meet and greet begins at 130 PM ET followed by the meeting from 2-3 PM ET. 

NCATS is soliciting input on identifying challenges related to the early identification of individuals who could potentially benefit from gene-targeted therapies and the roadblocks to the equitable and timely delivery of such therapies to them. If you have not already, join REN in signing on to a letter drafted by Epilepsy Foundation and CURE Epilepsy here. Sign ons due by June 20.  

Does your epilepsy organization want a booth in the Epilepsy Resource Center during AES Annual Meeting?  Sign ups have begun and 40 nonprofit tables are available. Get yours now.

ILAE has released proposed position papers on syndrome definitions with feedback due 7/15. Have you or your scientific advisors reviewed and commented for your rare diagnoses. Learn more here. 

Also if you have not already, please add your inputs to the genetic report survey. The more insights by disease the better. Your insights will help REN's work group improve these reports for your patients and providers! 

Advocating for rare epilepsies one podcast at a time. Listen to a podcast with Khaliah Fleming  from The National CMV Foundation and Cody Stevens from PMG Aware on the rare epilepsies. 

As always - member blogs, upcoming conferences, rare disease awareness days, and news follows! 

Get To Know REN Members.

Help Support Academic Research for RARES.

Two international academic groups have reached out to REN to invite our members and your constituents to participate in initiatives to improve transitions and psychosocial supports. We hope REN leaders will participate in both and share these with your families as well. REN screens these requests to ensure they align with REN's mission and hope our members will make every effort to support these important research initiatives and ensure the rare epilepsy POV is considered. 

Mark Your Calendars.

A list of meetings for Rare Leaders and your constituents follows to attend and promote:

UPCOMING: 

• 6/9 CDC/NINDS webinar on Health Services Research in Epilepsies. 3:30-5 PM ET. Zoom link here. 
• 6/9-11 Global Genes Rare Drug Development Symposium (RDDS) here
• 6/10, 6/17 NIH Virtual Meeting on Gene-Targeted Therapies. More information here. 2 dates remain with different topic focus. 
• 6/10 DEE-P's Continuous Spikes and Electrical Status Epilepticus Webinar here
• 6/15-6/24 CNF's Transitions of Care Summitt - FREE sign up here. 
• 6/16-18 AntiEpileptic Drug & Device Trials XVI registration here. REN negotiated a $25 PAG rate - select patient in your registration!
• 6/16 DEE-P's Seizure Monitoring Tools - What's Best for You and also Understanding Seizure Tracking & Available Tools- here
• 6/26-27 NORD's The Living Rare Forum is seeking speakers. 
• 6/30 Genetics - Everything You Need to Know Facebook Live - here
• 7/7-8. Save the Date for NINDS Nonprofit Forum. 
• 7/14-22 Rare Dz Week on Capital Hill sponsored by Everylife Foundation. Reg opens 4/21 
• 9/29-10/2 Save the Date for the 50th Annual Child Neurology Society (CNS) meeting 
• 12/3-7 AES 2021 Chicago, IL - Exhibits are open! More information here including Epilepsy Resource Area with discounted tables. 

RECAPS:

• If you missed PAME's Understanding Disparities in Epilepsy Mortality listen here.  
• If you missed NIH Rare Disease Day (3/1/2021) feature story and recordings here
• If you missed AES 2020, catch highlights here. 
• If you missed the Upper midwest Rare Epilepsies Conference (organized by EF Greater Chicago, Michigan, Minnesota and Wisconsin) you can listen here.

Any other broad conferences on your radar? Please share with info@rareepilepsynetwork.org. Also, got a conference for your specific diagnosis? Want to invite colleagues from other PAGs to observe? Feel free to post information/invites on REN Google Groups list-serve. Send a message to: ren-rare-epilepsy-network@googlegroups.com 

#RareEpilepsies - Awareness Days.

Shoutouts to upcoming Rare Days. Show other REN MEMBERs some love, and support #RareEpilepsies! See events that each organization is hosting. Add your awareness days here. 

Good Reads.

• Publication re: Understanding natural histories in genetic epilepsies from EMRs here. 
• A new language for big data in the epilepsies here plus an explainer blog.
• Article addressing neuropsychological diagnostics in adults with epilepsy here. 
• New research on correlation between SUDEP and sleep article and publication. 
• Managing challenging behaviors, check out CNF's behavior management hub. 
• Good article on 6 Hidden Obstacles People with Rare Disease Face from The Mighty here. 
• New Rare Disease Company Coalition includes epilepsy industry partners, FYI here. 
• Article about drug repurposing pricing featuring 2 Rare Epilepsies: SLC6A1 and STXBP1 here. 
• Precision Therapy in the genetic epilepsies of childhood article here.  
• Navigating the Diagnostic Odyssey in RARE Revolution magazine here. 

News, publications, other resources to share? Contact info@rareepilepsynetwork.org. 

Got Research Grants? Looking for Data? 

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Share news, information and more to info@rareepilepsynetwork.org

Rare Epilepsy Network (REN) working with urgency

to collaboratively improve outcomes of rare epilepsy patients and families

by fostering patient-focused research and advocacy.