May 2021

May is here which means summer is right around the corner!  Since May's monthly membership meeting otherwise falls on Memorial Day Monday (5/31), we are going to postpone our monthly Membership meeting to June 7 at 2 PM ET. We will cancel the June 28th mtg and plan to meet again  end of July. Our informal meet and greet chat will start at 1:30 PM ET.  

 

Please sign up for a FOCUS Group here to share your feedback on REN progress and promise. Meetings are 30 minutes each and will be conducted between May 10 - 19. 

 

Also if you have not already, please add your inputs to the genetic report survey. The more insights by disease the better. Your insights will help REN's work group improve these reports for your patients and providers! 

 

The Rare Epilepsies Conference presented by the Upper MidWest Epilepsy Foundations is this Friday-Saturday. See the agenda here.  Shout outs to Tracy Dixon-Salazar, Yssa DeWoody and Amanda Moore who are presenting. Register FREE and share with your constituents to learn more about what to do when nothing has worked, the pipeline for new and emerging therapies, supporting physical, mental and cognitive health, Planning for the future and more

 

Invites to participate in research, meet the NEW CC, upcoming conferences and news! Keep reading. 

Help Support Academic Research for RARES

Two international academic groups have reached out to REN to invite our members and your constituents to participate in initiatives to improve transitions and psychosocial supports. We hope REN leaders will participate in both and share these with your families as well. REN screens these requests to ensure they align with REN's mission and hope our members will make every effort to support these important research initiatives and ensure the rare epilepsy POV is considered. 

 

The Sydney Children's Hospital Network clinical genetic epilepsy and neurogenetics research group have recently partnered with genetic epilepsy families in Australia to develop 6 short (4 minute) videos which aim to provide psychosocial support to parents of children who have a suspected or confirmed genetic epilepsy. These resources were designed with families based on extensive preparatory interviews and focus groups.

 

They are asking REN member organizations to disseminate a short survey to your US and international patient/caregiver community networks to gather feedback. 

 

Take this survey yourself and promote it to your membership here. 

 
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Toronto Western Hospital Epilepsy Genetics Research Program invites REN members to participate in a survey on “Perception of transition from pediatric to adult healthcare system in patients with epilepsy” headed by Dr. Danielle Andrade at the Toronto Western Hospital.

 

The results of this study will help us identify and understand the difficulties experienced by patients/people with epilepsy and their families around the process of transition. It will also help identify issues around transition of care which can help with future guidelines and policies around transition of care in epilepsy.

 

To participate, please contact Research Coordinator, Quratulain Zulfiqar, Quratulain.zulfiqar_ali@uhn.ca

 

 
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Meet REN's NEW Coordinating Committee

Mark Your Calendars

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

 

  • 5/7-8 Promote the Upper midwest Rare Epilepsies Conference (organized by EF Greater Chicago, Michigan, Minnesota and Wisconsin). See the full agenda and line up here. Please register and encourage your patients and their caregivers to do the same.  This event is FREE. REN members and dedicated professionals are on the agenda!
  • 5/18 PAME Webinar: Understanding Disparities in Epilepsy Mortality. Free. Register here. 
  • 6/3, 6/10, 6/17 NIH Virtual Meeting on Gene-Targeted Therapies. More information here. 3 dates with different topic focus. 
  • 6/9 CDC/NINDS webinar on Health Services Research in Epilepsies. 3:30-5 PM ET. Zoom link 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. 
  • 7/7-8. Save the Date for NINDS Nonprofit Forum. 
  • 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 
  • 12;3-7 AES 2021 Chicago, IL - Exhibits are open! More information here including Epilepsy Resource Area with discounted tables. 

 

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. 

 

  • 5/13 SLC13A5 Awareness Day 
  • 5/14 International Ring14 Awareness Day
  • 5/15 TSC Global Awareness Day
  • 5/17 World NF Awareness Day

News You Can Use

  • AES Research & Recognition Awards: 2021 Call for Nominations. Each year, the American Epilepsy Society presents five prestigious awards that recognize significant accomplishments, contributions, and service in the field of epilepsy by AES members and others. AES members, along with the greater epilepsy community, are invited to nominate stand-out epilepsy professionals for the awards to be featured at the 2021 AES Annual Meeting in Chicago, IL. Nominations must be submitted by 11:59 PM PST on Friday, June 4, 2021. Visit the awards page for more information.

 

  • CDISC & NORD Partner to Develop Data Standards for Rare Diseases. Read more here. 

 

  • Data silos are undermining drug development and failing rare disease patients. Read more here. 

 

  • Proceedings of the Sleep and Epilepsy Workgroup: Comborbidities here.

 

News to share? Contact info@rareepilepsynetwork.org. 

Got Research Grants? Looking for 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. 

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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.

Visit: www.rareepilepsynetwork.org