Exciting news - the Advocates' Editorial following the Curing the Epilepsy Conference (CTE '21)  is available online. Read about how advocates recommend we translate research toward improving outcomes for all epilepsies including rares here.  

REN prioritizes collaborations to strengthen our voice. 40+ REN Members collectively advocated to National Center for Advancing Translational Sciences (NCATS) the importance of early diagnosis and equitable access to gene therapies.  

Save the date for our next REN Membership meeting on July 26. Our informal meet and greet begins at 1:30 PM ET followed by the meeting from 2-3 PM ET.  

Shout-outs to Gabi Connecker, Warren Lammert, Alison Kukla, Carol DeLizzio and other epilepsy advocates who presented at the Antiepileptic Drug and Device Trials Symposium (AEDD) meeting in June. Proceedings of the 2019 meeting are available here. 

A few timely reminders: 

• Register for a discounted booth @ American Epilepsy Society (AES) Annual Meeting. Get yours now.
• Share feedback with International League Against Epilepsy (ILAE) on syndrome definitions due 7/15 here. 

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

Collaborative Advocacy for RARES.

Recruiting for Research & Key Opinion Leaders.

Help recruit patients and caregivers for academic research and other opportunities to give voice to rares as key opinion leaders at critical stakeholder tables. Opportunities follow for YOU and your constituents. 

Mark Your Calendars.

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

UPCOMING: 

• 7/7-8. Save the Date for NINDS Nonprofit Forum. REN leaders Geraldine Bliss (Phelan Mcdermid), Mary Anne Meskis (Dravet) and Monica Weldon (Syngap) among others presenting 
• 7/10 - Webinar in Spanish on DEEs presented by DEE-P - share with Spanish speakers; July 20 too
• 7/14-22 Rare Dz Week on Capital Hill sponsored by EveryLife Foundation including the Diversity Roundtable on 7/22.  
• 7/14 Rare Disease Bootcamp on The Diagnostic Odyssey led by REN Member Amber Freed
• 7/16 PAME Webinar on Sleep, Night & SUDEP
• 7/19 - New Support & Resources for Siblings and Families from DEE-P
• 7/21 How RDCAP-DAP Can Help Inform Optimal Trial Design in Progressive Rare Disease here
• 9/13-14 & 18 Finding a Disease Modifying Therapy for LGS - Researcher Conference & Family Day
• 9/29-10/2 Save the Date for the 50th Annual Child Neurology Society (CNS) meeting
• 10/18-19 NORD Rare Disease & Orphan Products Breakthrough Summit here
• 12/3-7 AES 2021 Chicago, IL. Register here for a booth in Epilepsy Resource Area

RECAPS - in case you missed: 

• Epilepsy Foundation's Genetics - Everything You Need to Know Facebook Live (6/30) here 
• Dravet, LGS, NORD & DEE-P Collaborate to present Caring for a Loved One with DEE & Dravet (6/30) series available on demand here
• DEE-P's How Effective is Your Epilepsy Care webinar (6/28) here
• NORD's Living Rare, Living Stronger (June25-28) here featuring REN members Nasha Fitter and Kim Nye
• NIH Virtual Meeting on Gene-Targeted Therapies (June 2021). Day 1; Day 2 & Day 3
• CNF's Transitions of Care Summit (6/15 - 24) here
• NORD's Strategic Planning for Beginners (6/15) and other RareLaunch resources here 
• PAME's Understanding Disparities in Epilepsy Mortality (5/18) listen here  
• Upper midwest Rare Epilepsies May 2021 Conference here
• NIH Rare Disease Day (3/1/2021) feature story and recordings here
• AES 2020, catch highlights here

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? 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.

ICD-10 Code Watch.

Good Reads & Resources.

• The Rare Genomics Institute (RG) - a nonprofit organization in the rare disease space, is pleased to share information about a charitable initiative called the RareWear program which seeks to connect rare disease patients to medical device providers, which offer free devices to help patients to better monitor and manage their conditions.Through RareWear, both participating patients and sponsoring companies gain a better understanding of how innovative medical devices can help in the treatment of rare diseases. RareWear supports those living with rare cardiovascular, respiratory, neuromuscular, ophthalmic and chronic conditions. Please feel free to share the benefits of RareWear among your constituents of patients and caregivers. To apply to receive a device click here. For more information, visit here. 
• Listen as REN Member Nasha Fitter describes how the collaboration between RareX and Ciitizen could advance rare disease treatments here. 
• $180M in medical research to improve lives of Australians including $3M for unsolved DEEs here. 
• Epicare's patient-centered interactive e-learning modules corresponding to diagnosis and management of rare and complex epilepsies (Dravet, Autoimmune, Glut1, Sturge Weber, Landau-Kleffner) here. 
• Watch new REN Member Laura Will (PMG Awareness) discuss anticipatory grief and reframing here.  
• The National Economic Burden of Rare Disease Study (+ briefing) by EveryLife Foundation here.  
• Sleep & Epilepsy Workshop Summary in Epilepsy Currents here. 
• Advocating for rare epilepsies one podcast at a time with with Khaliah Fleming from The National CMV Foundation and Cody Stevens from PMG Aware. 

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

Got Research Grants? Looking for Data? 

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Rare Epilepsy Network (REN) working with urgency

to collaboratively improve outcomes of rare epilepsy patients and families

by fostering patient-focused research and advocacy.