Connect with patients, caregivers, and medical professionals to ask questions, share experiences, and support each other. Forums are run by Bionews, Inc.
- Main forums are public — visible to all.
- There are private groups just for patients and for parents/caregivers (membership required to join and post).
- Use private messages to chat directly with other users.
- The forums are for adults 18 and older.
Anything you post in the public forums can be read by anyone, even without an account, unless it’s posted in a private group. It can be copied by other people and may show up in search engines like Google or on other websites. If you’d rather stay private, pick a username that doesn’t identify you.
Direct questions to forum moderators or [email protected]. Thanks for being part of our community!
Last updated October 12, 2026.
Meet Your Moderators
Community Code of Conduct
Our forums are safe spaces for sharing and support. Please:
- Be respectful. Debate ideas, not people. Personal attacks, harassment, or hate speech are not allowed.
- Keep language clean—no profanity.
- Never share private info (yours or others’).
- No graphic or unsafe content, bullying, or encouraging illegal activity.
- Avoid spam, ads, duplicate posts, or “petitions.”
- Use the search feature before posting a new thread.
- Questions about a moderation decision? Email [email protected]
instead of posting about it. - This is peer support, not medical advice: always consult a healthcare professional for medical concerns.
Posts here are members sharing their own experiences. They aren’t reviewed by doctors, and they aren’t a substitute for your care team. Before you change anything about your treatment, talk with your doctor. If a post looks like it’s asking for medical advice, a moderator may suggest checking with your care team and point you to the resources below.
Where to find reliable information:
- SMA News Today: About SMA page
- Cure SMA: support, education, and family resources
- National Institute of Neurological Disorders and Stroke: research-based information
- ClinicalTrials.gov: current studies
Please note: This forum does not substitute for trained medical advice or treatment. Bionews, Inc. is not responsible or liable for any advice given by other members of this forum.
Respectful behavior
- Debate ideas, not people. Personal attacks, harassment, bullying, flaming, trolling, or hateful language (including racial, religious, ethnic, sexual, or gender-based slurs) are not allowed.
- “Flaming” means posts meant to insult, berate, or accuse (for example, calling someone a scammer or bully).
- “Trolling” means posting inflammatory or derogatory content mainly to provoke reactions.
- If you see a problem, use the report tools or contact a moderator instead of replying publicly.
Safe and appropriate content
- No graphic, sexually explicit, or violent content, and no content that glorifies or promotes self-harm or suicide.
- No encouragement of illegal activity.
- Keep the space family-friendly.
Sharing what’s worked for you is a big part of why this community exists. But on a health forum, some claims can do real harm. Here’s how we handle them.
We may remove posts that:
- Tell people to stop, skip, or change a prescribed treatment
- Claim a product, supplement, diet, or protocol cures or reverses a condition
- Sell or promote a treatment, supplement, or service
- Share dosing instructions for unapproved or off-label treatments
- Discourage people from seeing a doctor or getting emergency care
We add a moderator note with context and a link to reliable information when posts:
- Discuss experimental or off-label treatments without explaining that they’re unproven
- Describe research in a way the study doesn’t support, like calling early or animal results a breakthrough
- Share health news from sources we can’t verify
What’s always OK:
- Your own experience with a treatment, supplement, or clinical trial, framed as your experience
- Questions about treatments, research, or side effects
- Disagreeing with other members or with research, as long as you’re respectful
How decisions are made:
Moderators don’t review every post before it goes up, so we rely on members to help. If something seems false or risky, use Report → Misinformation on the post. Our moderators review reports and decide whether to remove, label, or leave a post. When a call isn’t clear, they check with our editorial team. If your post is removed and you think it was a mistake, email [email protected].
If you’re struggling: Living with a rare disease is hard on everyone it touches: patients, caregivers, and families. If you’re thinking about suicide or feel like you’re in crisis:
- In the US: Call or text 988 (Suicide & Crisis Lifeline), or text HOME to 741741 (Crisis Text Line).
- Outside the US: Find a local line at findahelpline.com.
- In an emergency: Call 911 or your local emergency number.
If a post makes you worried about someone, please report it to [email protected].
Language and profanity
- Keep language clean. Swearing or trying to bypass filters (e.g., letter/symbol substitutions) is not allowed.
- Repeated violations may result in a ban.
Privacy and personal information
- Never share your own or anyone else’s personal information (such as full name, address, phone number, email, or passwords).
- Do not post or quote private messages, emails, or other private correspondence without permission.
- Do not impersonate other users, moderators, or Bionews staff.
Constructive posting
- Avoid spam, “rants,” or repeating the same topic or text across multiple threads.
- Before starting a new thread, search to see if the topic already exists and post there when possible.
- It’s fine to share negative experiences or feedback, but keep it specific, respectful, and solution-focused.
No advertising, recruiting, or legal campaigns
- No ads, sales, or promotion of products, services, or fundraising.
- Recruiting for studies or clinical trials is not allowed unless approved through Bionews Clinical, which is part of Bionews. Researchers can email [email protected].
- Do not use the forums to organize or encourage legal action against individuals, organizations, or companies.
- Do not post on behalf of banned users or create new accounts to evade moderation.
Images and user-generated content
- Only share images you have rights to use and that are appropriate for all audiences.
- No sexually explicit, hateful, graphic, or illegal content in images.
- Avatars and signature images must be small, non-disruptive, and in good taste. Inappropriate images may be removed, and accounts may be restricted.
Moderation and enforcement
- Moderators may edit, move, or remove posts and may suspend or ban accounts at their discretion to protect the community.
- Bionews may update these guidelines at any time. Continued use of the forums means you agree to the current rules.
- Questions about warnings, bans, or removed content should be handled privately by contacting the community team (e.g., via the forums support email), not in public threads.
Ownership and account responsibility
- By posting, you grant Bionews a royalty-free, worldwide license to use your content for its business purposes.
- You are responsible for all activity on your account. Repeated or serious violations can result in loss of posting privileges or account suspension.
If you wish to report a violation or discuss disciplinary measures taken on your account, you can email [email protected]. To learn more about our content, see our Editorial Policy.