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Story Submission Policy | Voices for Sickle Cell

Story Submission Policy

Your story stays yours.

This page explains, in plain language, what happens when you share a story with Voices for Sickle Cell and the choices you keep the whole way through.

Last updated: [Month Year]

The short version

  • You choose how your name appears.
  • You choose where your story is shared.
  • A person reviews every story before anything is published.
  • Sharing a story does not guarantee it will be published.
  • You can ask us to change it or take it down at any time.

What happens after you press send.

  1. We receive it.Only the small team that reviews stories can see what you sent. Your email address is never published.
  2. A person reads it.We review every story with care. Nothing is published automatically.
  3. We contact you if needed.If you ticked “Do not publish without contacting me,” or if we would like to suggest a change, we reach out before anything goes live.
  4. We publish it your way.With the name choice and the sharing choice you made on the form. Nothing more.
  5. You stay in control.Ask us to edit your story, change how your name appears, or remove it. You do not need to give a reason.
  6. We keep listening.What we hear across many stories helps guide our education and advocacy work.

The choices you make on the form

These come straight from the story form. We follow them exactly.

Your name

How you are shown

  • Use my first name only
  • Use my full name
  • Publish anonymously

Your reach

Where it is shared

  • On the website only
  • On the website and social media
  • Privately with the organization, not publicly

Your say

Before it goes live

  • Do not publish without contacting me
  • Change your mind later, about any of these

What we check before a story goes live

The review protects you, the people in your story, and the people who will read it.

  • Consent and privacy
  • Respectful language
  • Identifying details you may not want public
  • Medical misinformation
  • Potentially traumatic content
  • Safety concerns

Questions people ask

Not seeing yours? Ask us.

Who owns my story?

You do. By sending it, you give Voices for Sickle Cell permission to share it in the ways you chose on the form, and only those ways. You can take that permission back at any time.

Can I change or remove my story later?

Yes. Contact us and we will update it or take it down from this website and from our own social media accounts. We cannot pull back copies that other people have already saved or shared, so please choose your sharing option with that in mind.

Will you edit what I wrote?

We may make light edits for length, clarity, or privacy, such as removing a last name or a clinic name. We do not change your meaning. If an edit is more than light, we check with you first.

Why might a story not be published?

Sharing your story does not guarantee publication. A story may be held back if it shares another person’s private details, gives medical advice, could put someone at risk, or does not fit our community guidelines. When we can, we tell you why and offer a way forward.

What about other people in my story, or in my photos and videos?

Please get permission from anyone who can be identified, and from a parent or guardian for any child. If we are unsure, we may remove a name, crop a photo, or ask you about it before publishing.

I am under 18. Can I share?

Yes, with a parent or guardian. If you are under 18, a parent or guardian must send the story with you and agree to how it is shared.

Can I talk about my treatment?

You can describe your own experience. Please do not include medical advice for others. Personal experiences are valid, and they do not replace professional medical care.

How are stories used in advocacy?

We look at what many stories have in common, without names, to decide where to focus. We will not use your individual story in a campaign, a presentation, or the press unless you say yes to that specific use.

Draft policy: needs approval Built from the consent options and review checks in the organization’s own notes. Before launch, confirm each answer above, add the email address for change and removal requests, and have a lawyer review the “Who owns my story?” wording.

Your voice can educate, encourage, and inspire action.

Share Your Voice Privacy Policy