January 2021

Happy New Year. Here's hoping 2021 will be a great year. For January, save the date for our REN MEMBERSHIP meeting on Jan. 25 at 2 PM ET. Stay abreast of key conferences and news in the rare epilepsy space. Read member blog introductions. 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. 

REN Membership Meeting - Save the Date - Jan. 25 @ 2 pm ET 

 

 

Don't miss the first membership meeting of the new year. Mark your calendar. Join the Google Group list-serve for reminders, news and more if you have not already. 

Get To Know REN Member Journeys

Shout out to Justin West and KCNT1 story in Orange Coast Magazine: What It's Like To: Seek a Cure for a Rare Disease.Submit a BLOG for your RARE EPILEPSY ORG here.  Stories in the news? Please share!

Stay Abreast of Key Conferences

Shout out to Rare Epilepsy Leaders for giving voice to the advocates and presenting testimony at the Curing the Epilepsies conference Jan. 4-6: Megan O'Boyle, Steven Roberds, Kim Nye, Laura Lubbers, Amber Freed, Brandy Fureman, Gabi Connecker and Ilene Miller. You can watch the conference online: Day One, Day Two, and Day Three.  Kudos to the many rare epilepsy advocates that actively participated in the break out sessions as well.

 

Other upcoming conferences... 

 

  • 1/20 Join REN Member Nasha Fitter for a discussion re: Natural History Studies for Rare Diseases.
  • 1/21 NIMH- Gene-Based Therapeutics for Rare Neurodevelopmental Psychiatric Disorders
  • 2/10-12: Epilepsy Foundation Virtual Leadership Conference on Digital Fundraising & Marketing
  • 3/25 - O'Donnell Brain Institute Annual Symposium - Autism Spectrum Disorders
  • 6/26-27 NORD's The Living Rare Forum is seeking speakers. 
  • Everylife Foundation & Global Genes Rare on the Road Save the Dates - 3/23, 5/1 (Las Vegas, NV), 5/15 (Miami, FL), May 22 (Chicago, IL) 

 

In case you missed it...

  • Missed the Nov 9 NIH Metabolism-based Therapies for Epilepsy? Catch the talks here. 
  • Missed Epilepsy Foundation's Pipeline conference? Catch presentations here. 

News for Rares

Exciting News for SCN2A. FDA granted both rare pediatric disease and orphan drug designations for PRAX-222 for the treatment of SCN2A DEE. FDA also granted rare pediatric designation for PRAX-562 for SCN2A and for SCN8A. Read more here.  

 

Exciting News for SCL13A5. Taysha Gene Therapies receives rare pediatric disease and orphan drug designations for SLC13A5. Other designations have been obtained for Rett syndrome, CLN1, and SLC6A1. 

 

Save the date for Rare Disease Day Feb. 28. Stay tuned for more information and register your org here. 

 

RARE IMPACT Awards seeking nominees here. 

 

News to share? Contact info@rareepilepsynetwork.org. 

Got Research Grants? Looking for Rare Epilepsy Data? 

The REN registry includes data for 1459 patients across 40 diseases!

 

Help promote the REN registry data to your researchers and clinicians. 

 

Your outreach is important whether your disease participated in the original registry or not.

 

Download the Registry Tool Kit and images and help spread the word via email, newsletters and social media! 

The Epilepsy Research Connection (ERC) is a repository of epilepsy research funding opportunities from non-profit and government organizations. Investigators can also register to receive new funding announcements. If your organization is interested in posting a grant notice on the Epilepsy Research Connection, please contact info@epirc.org for instructions. 

Keep In Touch  |  Become a REN Member  |  Join our List-serve

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.

Visit: www.rareepilepsynetwork.org