Order of the SWNs Foundation

Privacy Policy

Effective date: September 2026 — Adopted by the Board of Directors

Schwannomatosis patients have been harmed by systems that did not handle their information with care. Medical records were misread, misapplied, and passed between providers who used them to cement wrong diagnoses. Genetic information carries weight that extends beyond the individual patient to their family. The Order handles every piece of patient information with the gravity that history demands.

What this policy means in plain terms

We collect only what we actually need to serve you.
We never sell, rent, or monetize patient information — ever.
We never share your health or genetic information with NF clinics, pharmaceutical companies, insurers, or employers without your explicit consent.
We may share de-identified, aggregate statistics with researchers and clinicians to advance understanding of schwannomatosis.
You have the right to access, correct, and delete your information at any time.
Washington State residents have additional rights under the WA My Health MY Data Act.

A note on HIPAA

The Order of the SWNs Foundation is not a healthcare provider, health plan, or healthcare clearinghouse, and is therefore not a "covered entity" under HIPAA. However, we receive sensitive health and genetic information voluntarily from patients who trust us with it, and we treat that information with the same seriousness HIPAA was designed to protect — because patient trust, not legal obligation, is the foundation of everything we do.

The Order is subject to the Washington My Health MY Data Act (MHMD Act), which provides significant consumer health data protections for Washington State residents and others whose data is processed in Washington. This policy is written to satisfy those requirements.

1. What information we collect

Information you give us directly

Contact information: Name, email address, phone number, mailing address, and preferred communication method.
Health and diagnostic information: Information about your schwannomatosis diagnosis, including subtype (NF2-SWN, SMARCB1-SWN, LZTR1-SWN, SWN-NEC, SWN-NOS), symptoms, treatment history, surgical history, medications, clinical providers, and diagnostic timeline — when you choose to share it with us.
Genetic information: Information about genetic testing results relevant to schwannomatosis, including SMARCB1 and LZTR1 mutation status or gene-negative status — when you choose to share it with us.
Your story: Information you share as part of a patient story, testimonial, or advocacy submission — including your diagnosis journey, clinical experiences, and the impact of schwannomatosis on your life.
FIND Fund requests: Information relevant to a request for FIND Fund support, such as travel costs, insurance coverage, and financial need — collected only to evaluate and process your request.
Research and trial interest: Information about your interest in clinical trials, patient registries, or research studies, collected when you request a referral or connection.
Volunteer and membership information: Information you provide when joining The Order or applying for a volunteer role, including skills, availability, and areas of interest.
Donor information: Name, contact information, and gift amount when you make a donation. Financial account information is handled directly by The Order's payment processor and is not stored by The Order.

Information collected automatically

When you visit theorderoftheswns.org, we may collect browser type, pages visited, referring website, and general geographic location (country or region — not precise location). We do not use persistent tracking cookies for advertising. We do not use third-party advertising networks on our website.

Information from third-party platforms

When you participate in Foundation community spaces on third-party platforms (including Discord), your activity on those platforms is also subject to those platforms' own privacy policies. The Order does not control what those platforms collect.

What we do NOT collect

Patient lists purchased from any source
Social Security numbers (except as required for tax reporting on payments)
Financial account or credit card information (handled by payment processors)
Location data from mobile devices
Information about children under age 13 without verified parental consent

2. How we use your information

We use the information you share with us only for the following purposes:

Foundation programs and services — connecting you to clinical resources, research opportunities, community spaces, FIND Fund support, and volunteer opportunities.
Communications — newsletters, program updates, event announcements, and responses to your inquiries. You can opt out of non-essential communications at any time.
Program improvement — using aggregate, de-identified data to understand how our programs are working. We do not use individually identifiable information for this purpose.
Story sharing — only with your explicit written consent, and only as you authorize.
FIND Fund requests — using the information you provide to evaluate and fulfill requests for patient support.
Legal compliance — in limited circumstances where the law requires disclosure.
Foundation operations — maintaining records, producing financial reports, conducting Board work.
De-identified aggregate data sharing — with clinicians, researchers, and advocacy organizations to document and advance understanding of schwannomatosis. See Section 4.

We do not use patient health or genetic information to make decisions about a person's eligibility for Foundation programs, volunteer roles, or governance positions. A person's diagnosis, subtype, or health status does not determine whether they are welcome in this Foundation.

4. De-identified aggregate data

The Order may share aggregate, de-identified data with clinicians, NF specialists, researchers, academic institutions, and advocacy organizations for the purpose of documenting and advancing understanding of schwannomatosis — including diagnostic delay, misdiagnosis rates, genetic testing access, and subtype distribution. This data is never sold and contains no identifying information.

De-identified means: no names, initials, email addresses, phone numbers, dates of birth, diagnosis dates, or geographic information smaller than state or country level.

Minimum cell size: The Order will not publish or share statistics about any subgroup of fewer than 10 individuals. When a subgroup is too small, The Order will report it as "fewer than 10" or omit it entirely — protecting individuals in rare subtypes from being identifiable through aggregate data.

Members consent to aggregate data sharing through the explicit consent collected on the join form. You may withdraw from aggregate data inclusion at any time by contacting foundation@theorderoftheswns.org.

5. Genetic information

Genetic information — including SMARCB1 status, LZTR1 status, and gene-negative status — is among the most sensitive information a person can share. Genetic information has implications not only for the individual but for biological family members.

The Order applies its highest level of protection to genetic information:

Collected only when you voluntarily provide it for a specific Foundation purpose
Stored separately from general contact information
Never shared with any third party without your explicit written consent for that specific sharing
Never used to determine your eligibility for Foundation programs, governance, or community membership

Patients with gene-negative schwannomatosis (SWN-NEC) are part of this community fully and without qualification. The absence of a confirmed genetic marker does not create a lesser category of patient in this Foundation.

6. Minors

The Order does not knowingly collect personal information from children under the age of 13. Parents or guardians who believe a child under 13 has provided information to The Order should contact us at foundation@theorderoftheswns.org.

Schwannomatosis affects children and young adults. Minors aged 13–17 may participate in Foundation community spaces and programs. For programs that collect health information from minors, The Order will seek parental or guardian consent where appropriate. Parents and caregivers who share information about a minor family member for purposes of accessing support are acting as that child's authorized representative.

7. Community spaces

When you share information in Foundation community spaces — including our Discord server — that information is shared with all other participants in that space, not only with The Order. The Order does not control what other community members do with information you share.

Community members are expected to treat information shared by others in Foundation spaces as shared in confidence. Screenshotting, republishing, or discussing outside the community space what another member shared without their consent is a violation of The Order's Code of Conduct.

8. Patient stories and public content

Patient stories are among the most powerful tools in The Order's advocacy work. We will never use your story without your knowledge and explicit written consent. That consent will specify what will be used, where it will appear, whether your name or a pseudonym will be used, and how long the consent applies.

You may withdraw consent for story use at any time by contacting foundation@theorderoftheswns.org. We will remove or revise materials as quickly as possible when you withdraw consent.

9. Data security

The Order uses reasonable and appropriate technical and organizational measures to protect patient information — including access controls, password-protected systems, encrypted transmission for sensitive data, and vendor agreements requiring security standards.

No digital system is perfectly secure. The Order cannot guarantee its systems will never be breached. If a breach occurs that may have exposed patient information, we will assess the scope immediately, take steps to stop further exposure, notify affected individuals as required by Washington State law, and report to applicable regulatory authorities.

10. Data retention

The Order retains patient information only as long as needed for the purpose for which it was collected, or as required by law.

Type of information	Retention period
Active community member contact information	Duration of membership + 2 years
Donor records	7 years (IRS requirement)
FIND Fund recipient records	7 years
Patient story consent forms	Duration of story use + 3 years
Health information shared for program purposes	3 years after last program contact
Genetic information	Deleted upon request; otherwise 3 years after last program contact
Website analytics (aggregate, non-identifying)	2 years

You may request deletion of your information at any time. The Order will fulfill deletion requests within 30 days, subject to legal retention requirements (such as donor records for IRS purposes).

11. Your rights

Right to access: Request a copy of the personal information The Order holds about you. We will respond within 30 days.
Right to correction: Request correction of inaccurate information. We will update your information promptly.
Right to deletion: Request deletion of your personal information. We will delete your information within 30 days, subject to legal retention requirements.
Right to opt out of communications: Opt out of non-essential Foundation communications at any time. Every email includes an unsubscribe option.
Right to know what we share: Request information about whether and how your information has been shared with third parties.
No retaliation: The Order will not deny you access to programs, community, or support because you exercised any of these rights.

12. Washington State rights

Washington State residents have additional rights under the Washington My Health MY Data Act (MHMD Act) with respect to consumer health data, which includes the health and genetic information The Order collects.

Under the MHMD Act, Washington State residents have the right to:

Confirm whether The Order is collecting or sharing their consumer health data
Access their consumer health data held by The Order
Request deletion of their consumer health data from Foundation records
Withdraw consent for The Order's collection or sharing of their consumer health data at any time
Not be discriminated against for exercising any of these rights

To exercise MHMD Act rights, contact foundation@theorderoftheswns.org with the subject line "Washington Privacy Rights Request." We will respond within 30 days. If your request is denied, you may appeal to the Board Chair at the same address. Unresolved appeals may be directed to the Washington State Attorney General's office.

13. How to contact us

For privacy questions, requests, or concerns:

Email: foundation@theorderoftheswns.org

Subject line: "Privacy" or "Washington Privacy Rights Request"

Response time: All privacy inquiries answered within 5 business days. Requests fulfilled within 30 days.

Mailing address: Order of the SWNs Foundation, Washington State (mailing address on file with WA Secretary of State)

14. Updates to this policy

The Order will update this Privacy Policy when its practices change, when new programs are added, or when applicable law requires. When we make material changes, we will post the updated policy on theorderoftheswns.org with a new effective date and notify active community members and donors by email.