Privacy Policy & Confidentiality
Living Beyond MS is built on trust and emotional safety. We treat your personal identity, medical history, and community interactions with the highest standards of confidentiality.
Effective Date: September 2026 • Last Reviewed: Current
Strict Anonymity
Your real legal name and physical address are never published in public channels or shared with other members.
Zero Corporate Ads
We never sell member lists, health data, or contact records to pharmaceutical companies, advertisers, or third parties.
Right to Erasure
You maintain total control over your profile. You may request full account deletion and permanent record erasure at any time.
1. Information We Collect During Registration & Intake
To maintain a safe, female-only peer sanctuary and prevent commercial bots, scammers, and bad actors from entering, we conduct a structured intake process. During this process, we collect:
- Confidential Identity: Real legal full name, date of birth (to verify adult age 18+), and contact phone number.
- Community Identity: Your chosen community display name or pseudonym (which is what other members see).
- Medical Context: Diagnosis type (e.g., RRMS, SPMS, PPMS) and year of diagnosis, used to connect you with relevant peer discussions.
- Address Information: City, state/province, postal code, and country (plus optional street address if you wish to receive comfort care packages).
- Account Credentials: Securely encrypted email address and password managed via Firebase Authentication.
2. Confidentiality of Legal Names & Medical Diagnoses
We recognize that living with a chronic neurological condition involves sensitive, personal health information. Under no circumstances is your legal full name or physical street address displayed in the community feed, discussion channels, or member directories. Only your chosen pseudonym or first name is visible to peers.
Your diagnosis information is used solely to facilitate peer-to-peer discussions and provide tailored community resources. We will never share, broker, or monetize your health information with insurers, employers, or marketing entities.
3. Intake Phone Verification Records
A cornerstone of our community safety covenant is a brief phone verification check-in conducted by our volunteer intake leadership prior to granting full sanctuary access.
Phone numbers provided during application are stored securely with restricted administrative access. They are used solely for the verification check-in and emergency community moderation alerts. We do not engage in automated telemarketing or SMS spam.
4. Direct Messaging & Community Moderation
To uphold our zero-tolerance policy against predatory cure pitches, pharmaceutical sales, unverified medical solicitations, and harassment, private direct messages and public forum threads are subject to administrative oversight. Conversations are screened strictly for safety and guideline compliance.
5. Care Packages & Mailing Data
If you request a member comfort care package, your mailing address is handled solely by authorized volunteer fulfillment coordinators. Mailing details are not stored permanently beyond fulfillment requirements and are never shared externally.
6. Data Retention, Updates & Right to Erasure
You may review, update, or edit your account details at any time from your member profile settings. If you decide to leave Living Beyond MS, you have the right to request full erasure of your account, profile history, and intake records.
To submit an account erasure request, email our team at info@livingbeyondms.org. Requests are processed within 14 business days.
7. Contacting Our Privacy Team
For questions, concerns, or requests regarding this Privacy Policy, please contact our administration at:
Living Beyond MS Community Governance
Email: info@livingbeyondms.org
Subject Line: Privacy & Confidentiality Inquiry