Social Media Community Guidelines

( Social Media Community Guidelines revised on October 7, 2022)

Thanks for following and liking Simons Searchlight!

The Simons Searchlight social communities provide a platform to share progress and to stay connected with you, patient advocacy organizations, and other rare disease groups. We are always interested in hearing from individuals with rare genetic neurodevelopmental disorders, family members, researchers, community partners, service providers, and anyone else looking to join the conversation. These community guidelines serve as a framework for how to maintain positive and productive engagement.

Simons Searchlight Facebook homepage and Facebook groups

The Simons Searchlight Facebook homepage and its associated Facebook groups are for families, friends, researchers, and doctors affected by or interested in the genetic conditions we study to connect and share their experiences. We hope that you find this space useful to meet other community members and to learn more about these genetic conditions. Visit to participate in our research and to view our resources, including informational webinars, community newsletters, family stories, and other latest updates.

Facebook group administrative roles and moderation

Our Facebook groups are meant to provide a space for connection and to foster a positive and thoughtful online community. These groups are managed by the team at Simons Searchlight.

We ask our community to keep content relevant to the genetic condition, Simons Searchlight, and related patient advocacy organizations. Please extend courtesy and respect to fellow community members at all times. If you believe someone has violated the community guidelines (see below), please report it to us immediately by emailing

The Simons Searchlight team reserves the right to delete any posts at our sole discretion. Individual members, including organizational accounts, may be removed for violating community guidelines.

Community Guidelines

  1. Be kind and respectful. We all have different backgrounds and opinions, so please be courteous to others in the group when posting and commenting. This is a safe space for all, so we ask that you be mindful of others in the group and share your thoughts and opinions in a respectful manner.
  2. Absolutely no bullying or threats of any kind. If you encounter a post or comment that bullies or threatens another member of the group or anyone else, please report it and send an email to immediately.
  3. Keep posts relevant to the community. Posts should be relevant to the genetic community, Simons Searchlight, and related organizations. To avoid authorship confusion, we require that all posts that reference organizations or research unrelated to Simons Searchlight should include a standard disclaimer in the post text (For example: “This study is not affiliated with Simons Searchlight” or “Simons Searchlight will not be held responsible for any accuracy of the content shared by Facebook group members.”
    • For more information on this requirement, please see the section below entitled, Research promotion policy in Facebook groups). We also ask that you not post fundraisers in our groups or on our pages. Read more about our guidelines for other organizations/research and fundraising posts below.
  4. No spamming. Occasionally, group members or spam accounts post content that is completely irrelevant to the community. If you see posts like this, please report the post in the Facebook group or email
  5. Be mindful of privacy. We encourage group members to avoid sharing protected health information (PHI) on our online communities. If you ever have specific questions about your Simons Searchlight account or participation, please send an email to If others in the group post about their personal experiences, please respect their privacy by not sharing this outside of the group.

Advertising fundraisers on Facebook

Due to the policies in place, both at the Simons Foundation (non-profit agency funding Simons Searchlight) and at Geisinger (non-profit collaborating on Simons Searchlight), we are unable to allow community members to advertise any fundraisers on the Simons Searchlight Facebook homepage or on private Facebook groups.

Research engagement on Simons Searchlight Facebook page & Facebook groups

Background details

The Simons Searchlight Facebook page and genetic condition private Facebook groups are spaces that the Simons Searchlight team has created to share information and promote community connection.

The Simons Searchlight Facebook homepage is public for all to view and is the main source of information related to research announcements and updates.

The Simons Searchlight Facebook groups are private spaces where anyone is welcome to join, although these groups are intended primarily for those affected by that genetic condition. Simons Searchlight study coordinators review requests to join these groups and accept requests to join unless the requests come from suspected bots, commercial entities, or fake user accounts and spam profiles. If you requested to join one of our groups and think you were declined in error, please email

  • Simons Searchlight staff reserve the right to flag or remove posts by individuals that include clinical or other information that could increase the risk or harm to families or participants.
  • Simons Searchlight staff reserve the right to request Institutional Review Board (IRB), Ethics Board, equivalent approval, or exemption of any study that has been posted on the Simons Searchlight homepage or private genetic condition groups, regardless of whether or not the Simons Searchlight team plans to assist with advertisement of the study.
  • If a study refuses to provide IRB or Ethics Board approval or exemption or refuses to include the disclaimer text above, the post will be removed. In addition, future posts by the same researcher or research group will be blocked until the requirements are satisfied.

Research promotion policy in Facebook groups

Any Simons Searchlight private Facebook group member can post about ongoing or upcoming research studies, or the results of previous work that is relevant to our genetic community. Researchers and doctors are also permitted to join these groups, view, and post in any of the groups. All authors submitting a request for research promotion must provide confirmation of IRB or Ethics Board approval. This should be emailed to Simons Searchlight coordinators in advance of the post and sent to

All group members posting about research studies or research results are expected to add the bolded disclaimer below to their posts:

  • For study advertisement: “This study is not affiliated with Simons Searchlight.”
  • For the promotion of previous work: “The work described in the post is not related to the Simons Searchlight project.”

Any posts deemed by Simons Searchlight staff to be a research advertisement or a research result that does not include this disclaimer will not be approved. Simons Searchlight coordinators will contact the post author and request that this disclaimer be added. Researchers who contact Simons Searchlight coordinators before posting will be asked to add this statement to the body of the text.

An example of an approved post:

    • Check out this research publication that our organization has been working on with COMPANY! We are so excited to be making so much progress. Tune into our upcoming webinar where we explain the results of the study. This work is not affiliated with Simons Searchlight.

For assistance in the promotion of a research study please reach out to the Simons Searchlight team at Please reach out to the Simons Foundation Research Match team at about recruiting Simons Searchlight participants directly.

Simons Searchlight Twitter page

The Simons Searchlight Twitter page is primarily intended for families affected by any of the genetic conditions we study, patient advocacy groups, and researchers. Our goal is to share educational resources, updates about our study, new surveys, gene-specific content, patient advocacy group-related content, SFARI funding announcements, and more.

Twitter administrative roles and moderation

Our Twitter page is managed by the team at Simons Searchlight. Please extend courtesy and respect to fellow Twitter community members at all times. If you have any concerns about posts or conduct on our Twitter page, please contact us by emailing