REN and our members are busier than ever this fall. Conferences are in full swing and organizations are gearing up for November's National Epilepsy Awareness Month (NEAM), ISAN, SUDEP Action and more. Read on for ways to engage with these and other initiatives.

We appreciate your feedback on how we can improve this monthly communication, as well as updates, news announcements to info@rareepilepsynetwork.org.

• Members' ONLY Reminder: REN's next membership meeting is slated for Oct. 25 @  2PM ET with a pre-chat at 1:30 PM for those who want to join. The National Association of Epilepsy Centers (NAEC) will join as guests for the October meeting and answer your questions about the consortium of epilepsy centers. We will also have another round of brainstorming and landscaping priorities. Revisit the google docs here and bring your teams ready to engage!

• Shout outs to REN members who were panelists and speakers at Global Genes Rare Patient Advocacy Summit including: Kris Pierce (GETA), Jeff D'Angelo (Champ1), Terry Jo Bichell (Combined Brain), Amanda Moore (Angelman Syndrome Foundation), Mike Graglia (Syngap Research Fund), Nora Wong (The Norse Institute), and Tuesdi Dyer (CFC International)

• Congrats to Syngap1 who got their ICD10 code - F78.A1. Read more here. 

• Best Wishes to Vanessa Vogel-Varley (REN VC) for her service as Executive Director at Dup15Q Alliance. She will continue on as a Board member. Welcome to new ED Carrie Howell. 

• Welcome new REN Member, CureGRIN, Meagan Collins (Research Coordinator) and your entire team. Delighted to have you on board. 

• Save the Date for REN Membership Lunch @ AES, Saturday, Dec. 4 Noon to 1:30. More info to follow. 

Mark Your Calendars.

Please follow and promote the following to Rare Leaders and your constituents:

UPCOMING: 

• 10/14 New Advances in Stopping SUDEP
• 10/18-19 NORD's Rare Disease & Orphan Products Breakthrough Summit here
• 10/19-20 C-Path's International Neonatal Consortium (INC) will host its two-day annual scientific meeting (Virtual)
• 10/29 EF 2022 Shark Tank Competition LOI Deadline - Spread the Word & Apply here
• 12/2  Partners Against Mortality in Epilepsy (PAME) Conference here. 
• 12/3-7 AES 2021 Chicago, IL. Register here for a booth in Epilepsy Resource Area.
• 3/3-5 EF's 2022 Pipeline Conference (and Shark Tank) (Santa Clara, CA)

Any other 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? Member: Feel free to post information/invites on REN Google Groups list-serve. Send a message to: ren-rare-epilepsy-network@googlegroups.com (Members Only). 

#RareEpilepsies - Awareness Days.

October celebrates awareness for several rare epilepsies including: GNAO1, Lafora, Idic15 (Dup15q) and Phelan-McDermid Syndrome. Tag our friends and help spread the word! 

Good Reads.

• Solving the Molecular Basis of the Developmental and Epileptic Encephalopathies: Are We There Yet? Epilepsy Currents, 9/21
• Epilepsy Syndromes in the First Year of Life and Usefulness of Genetic Testing for Precision Therapy, Genes 2021. 
• Monogenic Epilepsies: Disease Mechanisms, Clinical Phenotypes and Targeted Therapies, Neurology, 0/21
• New Analytics Platform Sparks Opportunity for Rare Disease. REN was among the first databases absorbed into RDCA-DAP.
• Finding the Genetic Cause of Childhood Epilepsy helps improve treatment & care according to a Danish Study presented during the European Society of Human Genetics.
• New content on Epilepsy Foundation's website developed in collaboration with patient advocacy groups,including GLUT-1 and Grin2A. Check out a new Toolkit for Developmental Epileptic Encephalopathies (DEEs). 
• Comparative Effectiveness of Initial Treatment for Infantile Spams, Neurology, 9/2021. 
• Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organizations including REN members: SynGAP Research Fund, FOXG1, STXBPI Research Foundation, Lightning and Love Foundation, and SHANK2 Foundation here. 
• New Study Highlights the Value of Genetic Testing to Guide Clinical Management and Improve outcomes for Epilepsy Patients here. 
• A Tale of Two (ILAE) Presidents: An Interview with Samuel Wiebe and J. Helen Cross here.
• RAREParenting edition of Rare Revolution Magazine here. 

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

Key Resources @ Your Fingertips.

Advocacy In Action.

Doing our best to track advocacy, policy and regulatory initiatives that impact rare epilepsy stakeholders.  A few REN weighed in on and/or shared with Members.

• REN stood alongside NORD and other rare organizations in support of the Orphan Drug Tax Credit.  Letters to the House and Senate.
• 10/20 SUDEP Action Day - Get Involved & Raise Awareness
• 12/1-7 Infantile Spasms Awareness Week (#ISAW2021)

Recruiting for Research & KOLs.

Give voice to rare epilepsies! Help recruit patients and caregivers for academic research. Lend your point of view to critical stakeholder tables.  Opportunities follow for your PAG and your constituents follow. Click each box to learn more!

Therapy Watch.

 We are tracking therapies in the works for rares. Aware of others? Let us know. 

• UC San Diego receives $12.25M NIH grant to develop and enhance brain-sensing and brain-stimulating platform technologies to enable treatment of drug-resistant epilepsy here. 
• UTSA Brain Health Consortium awarded $12.5M to research genetic brain disorders here. 
• UCB Announces BRIVIACT Now FDA-Approved to Treat Partial-Onset Seizures in Pediatric Patients here.
• Active substance 4-aminopyridine - a new potential drug in the treatment of KCNA2 here.
• Zynerba Pharmaceutical enters Phase 2 for DEEs with Zygel here.
• FDA Acceptance and priority review for Ganaxolone for CDKL5 Deficiency by Marinus Pharmaceuticals here.
• FDA Clearance of IND for Neurogene's NGN-101 for CLN Batten Disease here. 
• FDA Accepts Epygenix Therapeutics IND to Initiate a Clinical Trial for EPX-100 as Adjunctive Therapy in Patients with LGS here.
• Possible new pathway for treating epileptic seizures in patients with Autism here. 

Got Research Grants? Looking for Data? 

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Rare Epilepsy Network (REN) 

working with urgency to improve outcomes of rare epilepsy patients and families

by fostering patient-focused research and advocacy.