Happy November.  Think of REN as an amplifier for the collective voice of rare epilepsy organizations. We kick off November with several critical calls to action: Promote the REN Registry. Vote on REN's Endorsement policy. Share Inputs on the agenda for the 2021Anti-Epileptic Drug & Device Trials conference.

Then read on to get to know REN members' journeys. Stay abreast of key conferences. Celebrate National Epilepsy Awareness Month.

Share this newsletter with your researchers, industry partners, clinicians, and others. 

Promote the REN Registry to Researchers & Clinicians

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! 

VOTE for REN's Endorsement Policy

At the last REN membership meeting, members voted for REN to develop an endorsement policy. We solicited your feedback and appreciate the inputs received. A draft of the policy is here.  To recap, when REN receives requests for letters of support (LOS) for grants, applications, proposals and the like,  here's what happens next:

1. If there is sufficient time, LOS will be forwarded to all REN members for a vote. A minimum of 20 votes will be required. And 2/3 of REN members voting will result in a REN endorsement or decline.
2. If there is not sufficient time for a full REN member vote, then:

• The request will be forwarded to members to act individually and/or 
• The REN CC may endorse the request by stating only that "the proposal is aligned with REN's mission and aims." 

No response will be counted as an endorsement. 

Please VOTE to accept/reject this policy here by 11/13. No response will be deemed in favor. 

Share YOUR Ideas for 2021 AEDD Conference Agenda

The Epilepsy Study Consortium is requesting topics for the 2021 AEDD meeting. If you could inform the conference topic with these key stakeholders, what would you focus on? Please share suggestions with REN at info@rareepilepsynetwork.org by 11/9.

Get To Know REN Member Journeys

 Be sure to Introduce your org here. Congrats to KCNA2's Nancy Musarra, PhD on the publication of her new book, The New Normal: The Seven Things You Need to Know as You Care for & Love A Child with Special Needs

Celebrate Rare Awareness Days

Stay Abreast of Key Conferences

Key Initiatives + Content for Your Radar

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.