Community Terms

Purpose and scope

These Community Terms govern RareFriends by Pocket Genes and any Pocket Genes feature that allows users, caregivers, professionals, or organizations to create profiles, join groups, follow organizations, post, comment, send messages, report content, or participate in matching.

RareFriends is intended to support careful peer connection, education, discovery, and practical next steps without turning private genetic reports into public community content.

Who this page applies to

• People who create or view RareFriends profiles.
• People who post, comment, message, follow, block, report, join groups, or use matching.
• Parents, caregivers, and representatives participating for another person where permitted.
• Professionals and organizations participating in community or trusted-organization features.

Definitions

Eligibility and identities

Community participation may be available to affected people, family members, caregivers, learners, professionals, and organizations depending on feature availability and account configuration. Users must not impersonate a person, clinician, researcher, organization, provider, or support program.

Real names are not required for every community interaction unless a specific workflow, provider, legal requirement, or organization review process requires accountable identity. Multiple accounts may be restricted when they are used to evade moderation or mislead others.

Community visibility

• Some profile fields may be visible to other users according to product settings.
• Group participation may be visible inside the group and to moderators.
• Posts and comments may be visible to the audience selected by the feature or group.
• Direct messages are not public but may be reviewed when reported, legally required, or necessary for safety investigation.
• Matching may use optional fields such as gene, condition, symptom, country, language, role, and journey stage.
• Private report access is not automatically visible to RareFriends members, followers, organizations, or integrators.

User choices and controls

• Users can choose whether to participate in RareFriends separately from report access.
• Users should be able to manage profile fields, tags, groups, follows, blocks, reports, and content deletion where the feature supports it.
• Users should not be pressured to share exact variants, full reports, contact details, location, family history, or identity information.
• Leaving a group, blocking a user, deleting content, or closing an account may not remove every moderation, legal, backup, or safety record.

Medical and scientific discussions

Community members may share personal experiences, practical support, questions for appointments, and general education. They must not present community statements as diagnosis, treatment instructions, emergency advice, genetic counseling, or a substitute for professional care.

Professionals and organizations must distinguish general education from professional advice, disclose promotional or sponsored material, avoid unsupported treatment claims, and avoid using community trust to solicit vulnerable users aggressively.

Privacy rules

• Do not share another person report, medical records, private messages, identifiers, report-access links, codes, or screenshots without permission.
• Do not doxx, re-identify, scrape, export, republish, or combine community information to identify people outside the intended feature.
• Do not pressure users to disclose diagnosis, variant, family history, symptoms, country, contact details, provider, or report contents.
• Do not move private conversations outside Pocket Genes without permission or use off-platform contact to bypass blocks or moderation.

Commercial behavior and organizations

Organizations and professionals may publish education, resources, events, program updates, support information, and patient-engagement material only within the rules for their account type. Promotional content must be labeled clearly and must not be disguised as peer support or neutral education.

Aggressive solicitation, fear-based messaging, unsupported cures, requests for private reports, or attempts to collect users health or genetic information outside the intended workflow can lead to content removal, account limits, or Trusted Organization review.

User content and moderation

Users keep ownership of content they create, but grant Pocket Genes the limited rights needed to host, display, format, translate, moderate, remove, preserve, and operate the community. Users remain responsible for the accuracy, legality, and privacy impact of what they publish.

Pocket Genes may remove content, reduce visibility, add labels, lock a thread, disable messaging, restrict features, suspend an account, remove an organization, or preserve records when needed for safety, legal, privacy, security, or community reasons.

Leaving RareFriends

A user may stop community participation separately from private report access. Depending on the feature, leaving RareFriends may hide or remove the profile, end matching, remove follows, leave groups, disable messaging, and start deletion or de-identification of community records.

Some posts, comments, reports, moderation records, or message metadata may remain temporarily or longer when needed for safety, legal compliance, dispute resolution, or backup rotation, even after a user disables their Pocket Genes presence. A user who wants total deletion of community records can email support@goldencrowvs.com and request it; Pocket Genes will clean those records from active systems and complete remaining cleanup as applicable backup or legal limits expire.

Pocket Genes responsibilities

• Keep community participation separate from private report access.
• Provide reporting, blocking, moderation, and trusted-organization review paths.
• Label source responsibility for user, organization, provider, and Pocket Genes content.
• Respond to privacy and safety reports according to severity and available information.

User and organization responsibilities

• Users must share carefully, respect privacy, avoid harassment, and avoid giving medical instructions.
• Caregivers and representatives must respect the privacy and authority boundaries that apply to the person they support.
• Organizations and professionals must avoid undisclosed promotion, patient pressure, privacy overreach, and unsupported claims.

Exceptions and limitations

• Pocket Genes does not continuously monitor every community interaction.
• Blocking and reporting help reduce contact but cannot guarantee that a person will never see public information.
• External resources, events, or organizations may have their own terms, privacy practices, and safety limits.

How to make a request or report a problem

Privacy, account, deletion, accessibility, safety, trusted-organization, and security requests can be sent to support@goldencrowvs.com. Use a subject line that identifies the issue, the affected Pocket Genes account or workflow, and whether the request is urgent.

Pocket Genes may need to verify the requester before changing or disclosing account information. Verification is handled proportionally to the request, the sensitivity of the information, and the risk of giving account access or private information to the wrong person.

Effective date, version, and review history

Related pages

• Community Safety Policy
• Privacy Policy
• Terms of Service
• Trusted Organization Standards
• Scientific Methodology