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(adopted March 2020)


Rare Epilepsy Network was born in 2013 with 10 groups fueled by a PCORI grant and singularly focused on a project to build a patient-centered registry. By 2019, REN had grown to 32 organizations, launched a registry, and onboarded 1,500 patients. When the PCORI grant came to a close in Spring 2019, REN members determined there was value in continuing the network, expanding from a single focused project to multiple projects, and improving transparency about REN’s mission, composition, and terms of engagement. As a result, this document was developed by a small transition workgroup to envision the future of REN. This effort begins anew and all rare epilepsy organizations and voices are welcome and encouraged to actively engage and drive the network’s future. 



This document represents the guiding principles to help the management and organization of the Rare Epilepsy Network (REN). It is not a legally binding agreement and does not supersede any existing individual policies of groups who participate in REN. It is intended to be a living document that is updated regularly to reflect changes in the conduct of the REN. REN also subsequently adopted Community Participation Guidelines characterizing expected and behaviors and those that won't be tolerated (Aug. 2020)



The mission of the Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.



The vision of the REN is to support, grow, and maintain a network of rare epilepsy groups formed around a living overarching structure tasked with defining REN projects, in which REN groups are able to choose to participate (or not). 


  1. Promote and enable successful patient-centered outcomes research

  2. Enable successful clinical trials in the rare epilepsies

  3. Increase representation of the rare epilepsies in funding, research, advocacy, and drug development, across a wide range of public and private health organizations


Core Values:


  1. Patient-Focused: The REN’s highest priority is the improvement of patient outcomes as defined by patients and/or caregivers.

  2. Collaboration: ​The REN serves as a vehicle to enable communication, coordination, and collaboration of efforts among its member organizations, partners, and with other epilepsy stakeholders toward the achievement of shared goals.

  3. Urgency: REN members share a sense of urgency in improving patient-defined outcomes through quality science.


Operational Philosophy:

The REN seeks to establish a flexible community where the full range of organizations, new and old, large and small, committed to improving the outcomes of rare epilepsy patients can come together. 

The REN will provide a forum for groups to collaborate to pursue large projects or smaller initiatives on topics of shared priorities. We recognize that each participating organization has its own distinct focus and target population but that we will find areas where shared goals can be achieved more efficiently by collaborating with others. 


There are a few rules, structures, or requirements of the REN that allow each organization to choose where and how to engage. The network will be organized to welcome and facilitate participation by the continually expanding number of groups advocating for genetic and other rare epilepsies, assisting them in connecting to the broader epilepsy community, and finding ways to collaborate to advance their interests. 

Establishing a network, including online forums, discussions, routine meetings, and processes will provide opportunities for the full range of rare epilepsy organizations to share information, connect with others, and join together on shared priorities. Together we can be stronger – and more effective.


REN Members:


  1. The core members of REN directly represent a rare epilepsy constituency and are committed to research and the REN mission and goals. This includes Patient Advocacy Groups (PAGs) defined broadly, irrespective of legal status (501c3) who align with the REN mission.

  2. Other epilepsy or broader non-profit organizations who share a commitment to research on the rare epilepsies and the REN mission/goals, are welcome as members.

  3. Groups that are not US-based are welcome to participate, since diseases and research have no boundaries, although some REN activities may focus on the United States funding and policies.


REN Partners:


  1. The REN may invite individuals with specific expertise to advise and consult and serve as non-voting members.

  2. Project-based partners with other entities may include individuals from government, academia, coalitions, researchers, professional associations, and industry. These partners will be engaged on a project-by-project basis and serve as non-voting members.


Application Process:


  1. Brief electronic application reviewed by the Coordinating Committee. 

  2. Each member organization will review and sign-onto the REN and agree to the terms outlined in this document.

  3. Each member organization should submit its logo and mission for inclusion on the REN website.

  4. Resignation from the REN should be submitted in writing to the Coordinating Committee. 




  1. Each member organization will identify a minimum of one representative to join calls/meetings and engage in forum discussions.

  2. Each member organization should commit to actively participating in at least one pre-project working group or project that aligns with its priorities.

  3. Each member organization has the flexibility to participate in advocacy activities that are meaningful and defer those that are not.




  1. Commit to the mission, goals, values, and guiding principles of the REN.

  2. Commit time to serve on workgroups and to drive projects. 

  3. Share research initiatives or potential projects with the REN group.

  4. Participate in monthly video conferences reserved for the last Monday of each month as needed.

  5. Attend the annual REN meeting at the AES. 

  6. Participate in potential voting/polling opportunities (one submission per member).

Coordinating Committee:

A Coordinating Committee is needed given the impossibility of a large group of 50+ organizations to administer the operations of the REN.


  1. REN will seek to become a broadly representative organization run by a Coordinating Committee that strives to include representatives of old and new, and large and small member organizations. In 2020 this Committee will be run by a self-nominated group. In 2021 we will begin a transparent and formalized election process, that will be proposed by the Committee for review by the full membership. 

  2. The Coordinating Committee works closely with the REN Coordinator (see below) to advance the REN goals, support members’ participation, facilitate the efficient operation of the diverse REN activities, and advance a public presence for REN policies or positions.  

  3. While seeking to represent the broad interests and priorities of all REN members, the Coordinating Committee will:

    • seek grants for REN operations.

    • have the responsibility for selecting potential projects for REN support, and then delegating a working group to pursue and develop that project.

    • form partnerships with other key players in the epilepsy arena in order to ensure that the rare voice is engaged in our partners’ strategic planning and operational missions. 

    • select opportunities for and submit positions/recommendations to public and private entities to advance the interests of rare epilepsies (consistent with REN’s mission and goals). 

  4. The Coordinating Committee will lead by example, working at all times to cultivate trust, promote coordination, and encourage collaboration across projects in furtherance of the shared mission and goals. When taking actions, operational or public, the Coordinating Committee will be clear that those positions are the positions of the Coordinating Committee, and not necessarily representative of the REN membership as individual organizations. 


REN Coordinator:


Given the complexity of keeping a complex membership organization operating efficiently and the limited time volunteer Coordinating Committee members can provide given their competing responsibilities, REN requires a professional to manage and support the diverse activities of the REN. We are in discussion with partners regarding a possible infrastructure grant to fund the REN Coordinator position. The Coordinating Committee will oversee this process and keep the full membership informed. 


The REN Coordinator, working in collaboration with the Coordinating Committee, will:

  • organize meeting agendas incorporating member updates and new topics,

  • take and distribute notes from meetings, 

  • recap open projects looking for broader participation, 

  • maintain a website to include updates of major projects and activities, 

  • prepare drafts for Coordinating Committee to respond to inquiries for REN participation,

  • facilitate member participation in special advocacy statements, 

  • provide administrative support to REN projects, 

  • provide assistance in preparing grant proposals, and 

  • may serve as the REN representative on projects or activities with non-member partners; however, individual projects may enlist their own project coordinators/administrator separate from the REN Coordinator. 


The Coordinator would report to the Coordinating Committee. 

The Coordinator will not speak for or represent the full REN unless acting within areas supported by the Coordinating Committee and REN members. 


Project Teams:

  1. Projects involving REN should be open to participation by all Member organizations to the extent (a) funding and (b) enrollment /participation criteria permit, but no REN project is required to include all Members.

  2. Project Team leaders may be non-REN Members, but Project Teams must include one or more REN Members on the project’s leadership team.

  3. Project Teams must report to the Coordinating Committee at least twice a year on progress (or as needed) and are welcome to report more frequently to the Coordinating Committee and at Member meetings to facilitate the work of the project.

  4. Project teams will have maximum flexibility and transparency in establishing the structure around agreed to projects including leaders, structure, funding, criteria for participation, and administrative home

  5. Project Teams must adhere to REN Values.




Monthly phone conferences will be limited to members and partners, as well as invitees. They will be scheduled for the last Monday of each month from 2-3 EST. Regular agenda items will include:

  • Updates on ongoing projects or activities

  • New inquiries/opportunities for possible action

  • Member sharing of projects of interest.

Until a REN Coordinator is on board, the meeting announcement, agenda, and follow-up information will be provided by a member of the Transition Work Group.


Coordinating Committee Meetings:

The Coordinating Committee will be free to develop its own schedule and means of communicating.


The REN is seeking funding to cover the costs of the proposed REN Coordinator as well as basic REN operations. Financial arrangements will be defined within specific grant agreements with supporting organizations. Because the REN is not a legal entity, we propose that Administrative oversight of the funding be managed through the non-profit organization(s) of a REN member or members whose organization(s) have an established financial management system and are willing to assume this fiduciary role. The structure of the relationship with the Coordinator could be either a contract or an employee. 

Individual projects which require a stream of funding would collaborate to secure funding for the project and develop appropriate financial management procedures.     

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