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Community Guidelines | Voices for Sickle Cell

Community Guidelines

A space that stays safe for every voice.

These guidelines cover every place our community gathers: stories on this site, answers to our monthly question, local groups and chapters, events, and our social media pages.

Last updated: [Month Year]

Nothing about our community without our community.

Warriors, caregivers, families, and allies shaped these guidelines. They exist so people can speak openly about hard things and be met with care.

Six things we ask of everyone.

1

Lead with respect.

Every person here is living their own version of this. Listen first. Disagree with ideas, not with people.

2

Protect privacy.

Share your own story, not someone else’s. What is said in a group stays in the group. Never post another person’s name, photo, or health details without their permission.

3

No harassment, hate, or discrimination.

No attacks, slurs, threats, or bullying, toward anyone, for any reason.

4

No medical advice or diagnosis.

Say what worked for you. Do not tell someone else what to take, stop, or change. That conversation belongs with their care team.

5

Personal experiences are valid.

No one has to prove their pain here. Lived experience matters, and it does not replace professional medical care.

6

Stories may be moderated.

A person reviews what is shared so this space stays safe. Sometimes that means an edit, a pause, or a no.

What that looks like day to day

Always welcome

  • Your own experience, in your own words
  • Questions, including the ones that feel basic
  • Encouragement, and honest talk about hard days
  • Pointing people to trusted sources and to this site’s resources
  • Telling us when something here is wrong or missing

Not allowed

  • Insults, threats, hate speech, or harassment
  • Sharing someone else’s private or health information
  • Telling someone what treatment to start, stop, or change
  • Selling, fundraising, or promoting products without our approval
  • False health claims or promised cures
  • Graphic content shared without warning

How moderation works

Moderation here is done by people, with care, and never to silence an honest experience.

  1. A person reviews it.Every story is read before it is published. Group leaders and staff watch over meetings, events, and our social pages.
  2. We reach out first when we can.If something needs a change, we contact the person who shared it and explain why.
  3. We act when we need to.We may edit for privacy, decline to publish, remove content, or ask someone to step away from a group or event.

See something that is not right?

Tell us. A person reads every report, and we keep the name of the person reporting private.

Report a Concern Story Submission Policy
Draft guidelines: needs approval Written from the organization’s own six guidelines. Have the board or advisory council confirm the moderation steps and the “not allowed” list before launch, and name who handles reports.

If someone is in danger

We are not an emergency service and cannot respond in real time.

  • Medical emergency or immediate danger: call 911.
  • Thoughts of suicide or emotional crisis: call or text 988, the Suicide & Crisis Lifeline, any time.