Last updated: March 2026 · Effective immediately upon joining
UniteRare Community is a peer support forum operated by UniteRare Inc. for informational and mutual support purposes only. Nothing shared in this community constitutes medical advice, diagnosis, or treatment recommendations.
All community members, including those who identify as healthcare professionals, are participating in a peer capacity only. Posts do not represent professional medical opinions.
Before any post or reply is published, our system automatically scans for and removes the following types of personal health information (PHI):
When PHI is detected, it is replaced with [PERSONAL INFO REMOVED] and you are notified. The original text is never stored.
UniteRare uses AI to extract anonymized insights from community posts to help other members. You choose what we can do with your post:
| Consent Level | What It Allows | Default? |
|---|---|---|
| Community Only | Your post is visible to community members. No AI extraction beyond PHI scanning. | Yes (all posts) |
| Insights Extraction | AI extracts drug names, denial types, and appeal strategies (anonymized) to generate community-wide overturn rates and access tips. | Opt-in |
| Personalized Recommendations | AI uses your post content to show you personally relevant clinical trials, appeal generators, and travel grants. | Opt-in |
You can change your consent at any time by editing your post or contacting us. Withdrawing consent triggers automatic cascading deletion of all derived data from your posts.
You have the right to delete all your community data at any time. This includes:
To delete your data, visit Settings → Delete Community Data or use the data deletion API. Deletion is processed immediately. A deletion audit record is kept (user ID and counts only — no content).
Note: Posts that have been quoted in replies by others may retain the reply content, but the original post will be anonymized.
Every post has a “Report” option. You may report content for the following reasons:
Our moderation team reviews all reports within 48 hours. Posts are hidden pending review and restored or removed based on the outcome. You will be notified of the resolution.
First-time posters have their posts held for review before publication as an anti-spam measure. Once you have 3 approved posts, your posts publish immediately.
The following are strictly prohibited in UniteRare Community:
UniteRare Community is available to users aged 13 and older. Users under 13 are not permitted to create accounts or post.
Users aged 13–17 may participate with parental or guardian awareness and consent. During registration, minor users must confirm that their parent or guardian is aware of and consents to their participation.
If you are a parent or caregiver of a child with a rare disease, please create an account as a caregiver to participate on their behalf.
If we discover that a user under 13 has created an account, we will delete their account and all associated data immediately.
Healthcare professionals, patient advocates employed by pharma companies, and others with commercial interests in rare disease treatments are welcome to participate in our community, subject to the following:
UniteRare does not accept payment to promote products in the community. Our access tips and overturn rates are community-generated and independent.
Violations of these terms may result in:
We apply a graduated approach for first violations with clear notification of the reason. Severe violations (self-harm content, doxxing, fraud) result in immediate action.
Appeals may be submitted to community@uniterare.com within 30 days of a moderation action.
We may update these terms as our community grows and to reflect regulatory changes. We will notify active community members of material changes via email or in-app notification. Continued participation after 30 days constitutes acceptance of the updated terms.
Email us at community@uniterare.com or visit our Privacy Policy and General Terms of Service.