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Your SWN Song

Every schwannomatosis patient has a story that took too long to be told. Write yours here — in your own words, at whatever length feels right. You choose who sees it.

Before you begin — this is not a HIPAA-covered systemThe Order of the SWNs Foundation is a patient advocacy organization, not a healthcare provider. This form is not covered by HIPAA. Information you submit is not stored in a secure medical records system and does not carry legal medical privacy protections. Share only what you are comfortable sharing. You are not required to provide any identifying information — you may write completely anonymously.

Who are you? (optional)

Keep me anonymous — do not attach my name to this storyYour name or a name you’d like to use

What type of SWN do you have? (optional)

Your timeline (optional — age in years, leave blank if you don’t know)

Age when you first noticed something was wrongAge when you first felt or found a tumorAge when you received a correct SWN diagnosis

I have not yet received a correct diagnosis

Your SWN Song

In your own words. Your journey, what you want others to know, what you wish someone had told you, what finally helped, what still doesn’t. Write as much or as little as you want.

Who can see this?

PublicYour story is shared openly on the Order of the SWNs website. Anyone can read it. You are helping a stranger who has not yet found their name.

CommunityVisible to registered members of the Order — other patients, advocates, and verified supporters. Not indexed publicly.

Clinicians & Researchers OnlyNOT HIPAA-COVERED — this is an intentional restriction, not a legal one.We will only share this with verified clinicians and researchers through the Order's data portal, and we will not display it publicly on the site. However, this form is not a HIPAA-covered system. There is no legal medical privacy protection attached to this choice — only our promise.

Private — Data OnlyNOT HIPAA-COVERED — your text is stored on standard servers, not a secure medical system.Your written story will never be shown to anyone. Only anonymous aggregate data (ages, gene type, years waited) may be used in research statistics. We will not intentionally share your story — but this is a promise, not a legal protection.

I understand that this form is not HIPAA-covered and that The Order of the SWNs Foundation is not a healthcare provider. I am sharing this information voluntarily, and I understand my chosen privacy level.