April and spring sightings abound!  Save the date for our REN MEMBERSHIP meeting on April 26th at 2 PM ET with an informal chat starting at 1:30 PM ET.  Get to know REN members, check out conferences for you and your constituents, catch up on great events you may have missed. Share your research grants on the ERC and continue to promote the REN Registry.  Share this newsletter with your researchers, industry partners, clinicians, and others. 

Get To Know REN Members

Learn more about Hope for ULD, CURE Epilepsy, Project 8p, and Foundation for USP7 Deletion or Mutation. Submit YOUR organization's journey here. Thanks for taking the time to learn about members of the #RareEpilepsy community!  Stories in the news? Please share with info@rareepilepsynetwork.org.

Mark Your Calendars

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

• 4/7 Share with your constituents a Webinar Series: Transitions to Adult Care by TSA
• 4/8-9 Epilepsy Foundation Research Roundtable for Epilepsy (RRE). Findings from the meeting will be shared in a peer-reviewed academic journal.
• 4/13 Another one for your constituents - CURE's Siblings and Severe Childhood Epilepsy Webinar here. 
• 4/17: Epilepsy Learning Healthcare System (ELHS) virtual spring Learning Session. ELHS includes 9 rare epilepsy organization partners among its membership of clinical and community teams, which work together to improve outcomes for all people with epilepsy. To learn more, contact elhs@efa.org
• 4/17-4/22 Check out the American Academy of Neurology Virtual Annual Meeting. 
• 4/21 RDCA-DAP Launching Professional Webinar Series on Value of Integrated Data and Analytics in Rare Disease Drug Development. 3rd Wednesday @ 12 ET, monthly. More information here. 
• 4/21 Check out NORD's  Transitioning to Adult Care
• 4/27-28 Learn more about two RareLaunch Workshops by NORD including Forming a foundation and Research Ready here. 
• 6/16-18 AntiEpileptic Drug & Device Trials XVI registration here. REN negotiated a $25 PAG rate - select patient in your registration!
• 6/26-27 NORD's The Living Rare Forum is seeking speakers. 
• 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 

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. 

#RareEpilepsies - Shout Outs for 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. Thanks Leah Schust for starting this list!

• April HIE Awareness Month
• 4/5 CSNK2A1 (OCNDS) Awareness Day
• 4/12 Gould Syndrome Awareness Day (for COL4A1/A2)
• 4/28 KIF1A Day

In Case You Missed These Great Events

Awesome talks to watch and share: 

• Proceedings of the Sleep & Epilepsy Workshop Overview + multiple sessions. 

News You Can Use

Biom Therapeutics Received Orphan Drug Status for BIO017 for Angelman. 

Insight into molecular mechanisms across epilepsy etiologies could lead to novel therapies. 

Help patients enroll in NORSE, FIRES and other Rare Epilepsy Registries. 

SCN2A – a neurodevelopmental disorder digitized through 10,860 phenotypic annotations

News 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.