REN News

August 2017

REN August 2017 Newsletter

Includes the latest upcoming events, member news, meeting reports and enrollment updates. 2017 RARE Patient Advocacy Summit September 14-15, 2017 - Irvine, CA, Hope for Hypothalamic Hamartomas 2017 Family Forum December 2-3, 2017 - Washington, DC, The REN Dashboard is now LIVE! This new tool enables users to view data collected via the REN survey and learn about our cohort and their caregivers in variables such as demographics, diagnoses, comorbidities...

May 2017

REN Brochure

The Rare Epilepsy Network has released a new brochure that describes the registry, mission, partners and the benefits of joining and participating in our research.

May 2017

REN May 2017 Newsletter

Includes the latest upcoming events, member news, meeting reports and enrollment updates. A Patient-Focused Drug Development meeting will be on on June 21, 2017. The purpose of this meeting is for individuals affected by tuberous sclerosis complex (TSC) and caregivers of dependent adults or children to communicate your perspectives on living with TSC directly to the FDA...

February 2017

2017 NIH Rare Disease Day Presentation

The Rare Epilepsy Network (REN) is a consortium of partners committed to conducting research to improve outcomes of rare conditions associated with epilepsy and seizures. REN is a Patient Powered Research Network funded by PCORI and part of PCORnet. Led by The Epilepsy Foundation, in collaboration with Research Triangle Institute International and Columbia University, REN includes...

December 2016

Rare Epilepsy Network (REN) Strategic Planning Workshop

The goal of this workshop was to develop a REN research strategic plan, and implementation strategies for the next 1 and 5 years. REN Co-Investigator Dale Hesdorffer welcomed participants to the meeting and asked for aroundthe-room introduction of attendees (participant list attached), who included representatives of rare epilepsy organizations, the REN professional advisory board, and researchers...

December 2016

REN December 2016 Newsletter

Representatives from the 26 rare epilepsy organizations that make up the REN, the REN Professional Advisory Board, and researchers came together in Houston on December 1 for the first ever REN Symposium. The goal of this workshop was to develop a REN research strategic plan, and implementation strategies for the next 1 and 5 years. Deborah Hirtz, MD, board member of the Pediatric Epilepsy...

April 2016

REN April 2016 Newsletter

Welcome to our first quarterly newsletter. It has been my pleasure to serve as Principal Investigator of the Rare Epilepsy Network for almost 2 years. First I want to thank all of you who have joined our data base family. This database is by and for people with a rare epilepsy and their caregivers. Since beginning our journey our robust database was developed and launched and we have enrolled more than 1000 participants representing 22 rare epilepsies...