Rare Voices Community Guidelines – Kindness, Respect & Safety
Rare Voices Community Guidelines
Kindness, Respect & Safety
Welcome to Rare Voices.
This community exists because living with a rare disease can sometimes feel isolating, exhausting and difficult to explain.
My hope is that Rare Voices becomes a place where people can speak openly, ask questions, share experiences and connect with others without fear of being judged.
To make that possible, we need a few simple principles.
Not because I want this community to feel like a room full of rules.
But because trust needs care.
1. Treat People with Respect
Behind every username is a human being.
People here may be living with pain, fatigue, uncertainty, fear, grief or difficult personal situations that are not immediately visible.
Disagreement is allowed.
Different experiences are allowed.
Different opinions are allowed.
Personal attacks, insults, harassment, humiliation, discrimination or hateful behaviour are not.
You can disagree with an opinion without attacking the person behind it.
2. Your Experience Is Valid — But It Is Your Experience
Sharing personal experiences is one of the most valuable parts of this community.
You are welcome to say:
“This helped me.”
“This was my experience.”
“This treatment caused problems for me.”
But please remember that what works for one person may not work for another.
Rare diseases are complex. Even people with the same diagnosis may have very different symptoms, treatments and medical situations.
Share your experience honestly — but do not present personal experience as a universal medical fact.
3. This Community Does Not Replace Medical Care
Rare Voices is a peer community.
It is not a substitute for doctors, emergency services, qualified medical professionals or individual medical advice.
Please do not tell another member to stop prescribed medication, change a dosage or ignore professional medical care.
You may share what you experienced.
You may discuss questions you want to ask your doctor.
You may talk about treatments and side effects.
But individual medical decisions belong between a person and their qualified healthcare professionals.
4. Protect Your Privacy — And the Privacy of Others
Share only what you feel comfortable making public.
Please think carefully before posting:
full names
home addresses
private phone numbers
personal email addresses
medical documents containing identifying information
information about children
photographs of other people without permission
Never share another person’s private information without their consent.
Once something is published online, it may be difficult to fully control where it goes.
5. No Pressure to Share
You do not owe anyone your diagnosis.
You do not owe anyone your medical history.
You do not owe anyone photographs, documents or personal explanations.
Some members may write long posts.
Some may only write a few words.
Some may simply read quietly for a while.
All of that is okay.
6. Be Especially Careful with Medical Information
We welcome discussions about research, treatments, therapies and medical experiences.
But please avoid spreading claims that are presented as proven facts when reliable evidence is missing.
Dangerous misinformation may be corrected, limited or removed when necessary to protect the community.
When possible, link to trustworthy sources such as recognized patient organizations, hospitals, universities, scientific publications or public health institutions.
Questions are welcome.
Curiosity is welcome.
Certainty without evidence can be dangerous.
7. No Spam or Exploitation
Rare Voices is not a place to exploit vulnerable people.
Please do not use the community for:
spam
aggressive self-promotion
misleading fundraising
suspicious financial requests
miracle cures
unproven products presented as guaranteed treatments
recruitment into questionable schemes
repeated commercial advertising
Researchers, organizations, patient groups and professionals who want to share opportunities or resources should do so transparently and respectfully.
8. Respect Difficult Stories
Some members may share experiences involving diagnosis, disability, grief, isolation, mental health or loss.
Respond with care.
You do not always need to solve someone’s problem.
Sometimes a thoughtful:
“I hear you.”
can mean more than ten paragraphs of advice.
9. Life Beyond Illness Is Welcome Here
Rare Voices is about rare diseases.
But people are more than diagnoses.
You are welcome to talk about photography, animals, nature, music, books, creativity, hobbies, funny moments, good news and everyday life.
Joy belongs here too.
So does humour.
And yes, in my case, probably the occasional story about my dog Liza. 😄
10. Help Us Protect the Community
If you see content that appears abusive, dangerous, discriminatory, exploitative or seriously misleading, please report it rather than escalating the situation publicly.
Moderation decisions may be necessary to protect members and the purpose of this community.
Depending on the situation, content may be edited, moved, closed or removed, and accounts may be restricted when necessary.
The goal is not to silence honest conversation.
The goal is to protect a space where honest conversation can exist.
One Final Thought
Rare Voices will only become what we create together.
A forum is software.
A community is people.
My hope is that we build something here that is honest without becoming cruel, supportive without pretending everything is easy, and hopeful without ignoring reality.
You do not have to be perfect here.
You only have to remember that the person on the other side of the screen is human too.
Be kind. Be curious. Protect one another.
Welcome to Rare Voices.
Daniel
Founder of RareDiseasesLensMagic1974