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(adopted Aug 2020)

The mission of 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. In order to achieve our mission, we must create an environment that is inclusive of many voices and communication styles, so that we can learn from each other, utilize all skillsets, and go further together.

As REN solidifies our growing community and considers the shared values, powerful leaders, diverse voices, and complex histories among the rare epilepsy organizations, we want to adopt community guidelines that will help support and protect a healthy, productive network. We want all members to have an opportunity to participate and contribute and are valued for their skills, experience, and unique perspectives. As such, we have adopted these Community Participation Guidelines and require all those who participate in REN, members and partners, to adhere to these guidelines:

Expected Behaviors

  • Make Space - Value each other’s ideas, styles and viewpoints. Seek diverse perspectives. Diversity of views powers innovation. Be aware of how much time is taken up by dominant members of the group. If you find yourself dominating a discussion, it is especially important to step back and encourage other voices to join in. “Winning” is when different perspectives make our work richer and stronger. 

  • Be Constructive - We must be able to speak directly when we disagree and when we think we need to improve. Be kind in these interactions and communications. Be constructive in criticisms, suggesting a path forward instead of just a roadblock. 

  • Be Collaborative - It is not sufficient to talk about collaboration, truly collaborative endeavours work on partnerships founded on trust, inclusion, and respect. Work to eliminate your own biases and prejudices. Think of others’ needs from their point of view. 

  • Take Responsibility - Be open to different possibilities and to potentially being wrong. Be aware of your impact and how intense interactions may affect other people. If you harmed someone through your words or actions, listen carefully, apologize sincerely, and correct the behavior going forward. 

  • Lead by Example - Your words and actions matter. By matching your actions with your words, you become a person others want to follow. Be part of creating solutions. Design your community and your work for positive behavior and hold others accountable.


Behavior That Will Not Be Tolerated: 

  • Personal Attacks - Conflicts will inevitably arise, but frustration should never turn into a personal attack. It is not okay to insult, demean or belittle others. Attacking someone for their opinions, beliefs and ideas is not acceptable. This includes sustained “talking over” or “heckling” of speakers.

  • Derogatory Language - Hurtful or harmful language is not acceptable. This includes deliberately referring to someone by a gender that they do not identify with, and/or questioning the legitimacy of an individual’s gender identity. If you’re unsure if a word is derogatory, don’t use it. 

  • Unwelcome Sexual Attention or Physical Contact - Unwelcome sexual attention or unwelcome physical contact is not acceptable. This includes sexualized comments, jokes or imagery in interactions, communications or written materials, as well as inappropriate touching or sexual advances. 

  • Violence and Threats of Violence - Violence and threats of violence are not acceptable - online or offline. This includes incitement of violence toward any individual, including encouraging a person to commit self-harm. 

  • Intoxication - Drinking alcohol or using prescription drugs to excess (or use of illegal drugs) while working or participating in REN communities, or pushing others to do so, or making derogatory comments about those who abstain from alcohol or other substances is not acceptable. 


Consequences of Unacceptable Behavior 

Inappropriate behavior from any REN community member will not be tolerated. Violation of these guidelines can result in you being asked to leave an event or online space, either temporarily or for the duration of the event, or being banned from future events and activities, and, as a last resort, potential loss of membership. 

'This work is adapted from CZI Community Participation Guidelines: [], a derivative of [], both licensed under CC BY-SA 3.0':

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