February 2022

Happy New Year! We took a break in January but it's back to the races!

 

February is a busy month as we celebrate International Epilepsy Awareness Day Feb. 14 and Rare Disease Day on February 28th. It's also Black History month which raise the intersectionality of the challenge when historically underserved communities are also diagnosed with rare disease. Programming by our partners EF and NORD below.

 

We hope all REN MEMBERS will regularly use the hashtag #RareEpilepsies as you post across your channels to strengthen our common cause. Many members also celebrate their awareness days this month and we wish you success in your campaigns. Tag REN on Twitter and we will like and retweet - https://twitter.com/RareEpilepsy

 

Check out research by Dr. Shellhaas' Lab (U. MI) on sleep disturbances incorporating data from REN's registry below. Seeing trends in the marketplace toward aquisition and collaboration across companies with interests in rare epilepsies. A top read for the month is Dr. Scheffer's article "Lightning Progress in Child Neurology in the Past 20 Years" in the Lancet (link below). 

 

REN recently welcomed 4 new groups to our community including: Malan Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics (FAST), CMCD Foundation, and KCNC1 Foundation. Our email has been busy with inquiries regarding GPAA1, DESSH, and Cri Du Chat. And our list-serve has seen threads around hiring Research Directors, finding funding, and more. Thank you to our friends at Angelman Syndrome Foundation for sharing the State By State Insurance Guide (link below). This will be quite helpful to our Members and their families. 

 

A reminder - REN's newsletter is publicly available and anyone can sign up to receive it. Our list-serve is reserved for REN Members and Partners only. 

 

 

 

With gratitude, 

 

The REN Coordinating Committee

 

 

 

 

 

PS. REN MEMBERS be sure to save the date for February 28 @ 1 PM ET - our next membership meeting.

Mark Your Calendars.

Events for Rare Leaders and your constituents:

 

UPCOMING: 

 

  • 2/14 International Epilepsy Day (ILAE/IBE)
  • 2/16 Epilepsy Foundation presents "The Ins & Outs of Getting An Accurate Diagnosis" with REN Chair, Yssa Dewoody. Event is Free. Register here. 
  • 2/22-3/3 EveryLife's Virtual Rare Disease Week on Capitol Hill here
  • 2/23 NORD's Webinar Series - Advancing Equity in Rare Healthcare (2/3) here
  • 2/28 Rare Disease Day
  • 5/13-15 EpiCon, Empowering Persons Living with Epilepsy (Nashville, TN) here 
  • 6/5-6 NEW DATE EF's 2022 Pipeline Conference (and Shark Tank) (Santa Clara, CA) here
  • 6/26 NORD's Patient & Family Forum - Living Rare, Living Stronger here
  • 7/4-8 XVI Workshop on Neurobiology of Epilepsy (WONOEP 2022) here
  • 12/2-6 AES Annual Mtg (Nashville, TN) 

 

Any other conferences on your radar? Please share with info@rareepilepsynetwork.org. Publicize your disease focused events on: REN Google Groups list-serve. Send a message to: ren-rare-epilepsy-network@googlegroups.com (Members Only). 

Spread Awareness for International Epilepsy, Rare Disease & So Many Rare Epilepsies.

Feb. 14 celebrates International Epilepsy Day. Help raise awareness of the rares! Use #EpilepsyDay #EpilepsyAwareness #InternationalEpilepsyDay and #RareEpilepsies

February 28th is Rare Disease Day. Join NORD, EURODIS and other partners to raise our voices for Rare Epilepsies.

 

#RareEpilepsies

Good Reads.

  • Sleep Problems Pervasive and Persistent Among Children with Epilepsy (Michigan Health Lab) - including data from Rare Epilepsy Network Registry! 
  • Focal Cortical Dysplasia as a cause of epilepsy: the current evidence of associated genes and future therapeutic treatments (ArXiv, 2022)
  • Rethinking Cerebral Palsy Origins (Boston Children's, Jan 2022) - including new thinking re: epilepsy.
  • How A Rare Brain Mutation Spread Across America (CCM2) (The Atlantic)
  • How Epilepsy is Affecting a Growing Number of Latinos (Palabra, Jan 2022)
  • Gene Mutations Could Cause Unexpected Deaths in Children (SUDC) (The Medical Progress, Jan 2022)
  • Predicting Which Children are More Likely to Develop Epilepsy (Hospital Healthcare, Jan 2022)
  • World Record-setting DNA Sequencing Technique Uses Clara Parabricks (NewsAKMI, Jan. 2022)
  • United States Epilepsy Center Characteristics: An Analysis of Data From the National Association of Epilepsy Centers (Neurology on February 1, 2022)
  • Studying the Causes of Sudden Death in Epilepsy (Medical Express)
  • Lightning Progress in Child Neurology in the Past 20 Years (The Lancet) 
  • National Boom in Dedicated Epilepsy Centers (Medscape, Dec. 2021)
  •  

 

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

Marketplace. 

  • UCB Acquires Zogenix and Fintepla
  • Gene Therapy Shows Promise at treating severe form of epilepsy (Dravet)
  • Praxis Precision Medicine Announces Publication of Preclinical Data (PRAX-562)
  • Companies to keep an eye on Eliem Therapeutics, 
  • Xenon And Neurocrine Collaboration
  • AstraZeneca Hands off Epilepsy Programs to Ovid

Key Toolkits & Resources @ Your Fingertips.

Got Research Grants? Looking for Data? 

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

 

Access data for comorbidities, developmental milestones, seizure medications, side effects, seizure history and more. 

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. 

Visit our Website |  Become a REN Member  | Follow Us on Twitter

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

 

Rare Epilepsy Network (REN) 

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

by fostering patient-focused research and advocacy.

Visit: www.rareepilepsynetwork.org