# BRAND: hardcoded brand strings — hand-edit on rename (Cycle A2). # MG Connect > Your MG story, organized for real doctor visits. MG Connect is a patient-first platform that helps people living with Myasthenia Gravis (MG) organize their health history between medical visits. It provides a calm, organized way to capture and carry a longitudinal health history over time — so appointments focus on decisions, not memory. MG Connect is a service of Engram Health, LLC, a Delaware limited liability company. --- ## What MG Connect Is MG Connect is: - A **personal organization tool** for people living with MG - A way to **capture changes as they happen**, without daily tracking - A **longitudinal record** to support clearer appointments MG Connect helps with: - Preparation for medical visits - Orientation between appointments - Caregiver collaboration — on the patient's terms --- ## What MG Connect Is NOT MG Connect is NOT: - A diagnostic tool or medical device - A replacement for your neurologist or care team - A monitoring or surveillance platform - A provider of medical advice, diagnosis, or treatment recommendations Its role is to support conversations — not to make decisions for you. **Important:** If you are experiencing a medical emergency — including signs of myasthenic crisis such as severe difficulty breathing or swallowing — call emergency services immediately (911 in the US) or go to the nearest emergency room. --- ## Key Concepts ### Longitudinal Health History MG Connect accumulates health events, symptoms, treatments, and observations over time into a single, organized record — reducing the need to reconstruct history from memory during medical visits. ### Between Medical Visits MG Connect serves as a continuity layer for the time between doctor appointments, when patients often manage symptoms, medication changes, and health events without clinical oversight. ### Care Transitions MG Connect helps patients communicate clearly when changing providers, seeing new specialists, or coordinating between multiple members of a care team. ### Patient-Controlled Sharing All sharing in MG Connect is explicit and revocable. Patients decide who sees what, and when. Nothing is shared automatically. ### Caregiver Collaboration Patients can optionally invite family members or caregivers to assist with documentation, preparation, or observations — without giving up control of their record. ### Doctor Packet (Clinical Summary) A structured, visit-ready document generated from patient-reported data. Includes a clinician snapshot, MG-ADL trajectory, treatment history, risk flags, patient questions, and pre-visit context. Uses deterministic derivation — not generative AI — for clinical safety. See /llms-clinical-summary.txt for full details. ### Emergency Card / Handover Sheet A printable one-page emergency card that summarizes critical MG information for ER staff and first responders. Includes patient identity, MG subtype, active medications, clinical flags (prior crisis, intubation, BiPAP history, bulbar involvement, immunosuppressed status, thymectomy), emergency contacts, and a list of cautionary/contraindicated drugs sourced from the MGFA Cautionary Drug List. Features a QR code linking to a shareable, read-only hosted version — so ER staff can scan and view it on any device without requiring login. ### MG-ADL Score Tracking The MG-ADL (Myasthenia Gravis Activities of Daily Living) is a standard 8-question patient-reported scale measuring how MG affects daily function. MG Connect tracks scores over time in a trajectory chart, helping patients and clinicians detect trends and measure treatment response. ### Infusion Tracking For patients on infusion-based therapies (e.g., IVIg, Vyvgart, Soliris, Ultomiris), MG Connect provides scheduling, outcome surveys, and trend tracking across infusion cycles. ### Pulse Checks Quick, low-effort "how are you doing?" check-ins between formal assessments. Captured in a timeline strip to surface patterns over time. ### Stability Streak A visual indicator showing consecutive days of patient-reported stability — reinforcing positive trends and providing motivation. --- ## How It's Designed MG Connect follows a few simple principles: - **Low effort** — no daily grind - **Longitudinal** — focused on patterns over time - **Patient-controlled** — you decide what's tracked and shared These principles shape what MG Connect includes — and what it intentionally leaves out. --- ## Pages - [Home](/): Overview of MG Connect and its value for people with Myasthenia Gravis. - [About MG Connect](/about): Why MG Connect exists, where it comes from, how it's designed. - [How MG Connect Works](/how-it-works): Step-by-step explanation of the platform. - [Start Here](/start-here): Orientation guide for people newly diagnosed with Myasthenia Gravis. - [For Caregivers](/for-caregivers): Information for family members supporting someone with MG. - [Trust & Privacy](/trust): Trust philosophy, privacy principles, research and business model. - [Medical Disclaimer](/disclaimer): MG Connect is educational and not medical advice. - [Terms of Use & Privacy Policy](/legal/terms): Full legal terms, privacy consent, and data authorization. ## Learn - [Learn About Myasthenia Gravis](/learn): Educational articles for patients and caregivers. - [MG Basics](/learn/mg-basics): What is Myasthenia Gravis, types, how it affects the body. - [Symptoms and Daily Life](/learn/symptoms-daily-life): Common symptoms, fatigue management, energy conservation. - [Treatments Overview](/learn/treatments-overview): Neutral overview of MG treatment approaches. - [Specialist Visits](/learn/specialist-visits): Preparing for medical visits, what to bring, questions to ask. - [Caregiver Guide](/learn/caregiver-guide): Understanding MG, recognizing crises, self-care for caregivers. - [News & Research](/learn/news-research): Curated MG research updates with patient-friendly summaries. - [Blog](/blog): Articles and updates from MG Connect. ## Tools - [Symptom Tracker](/tools/symptom-tracker): Track MG symptoms over time with structured entries. - [Visit Prep](/tools/visit-prep): Prepare for neurology appointments with organized summaries. - [Treatment Timeline](/tools/treatment-timeline): Maintain a chronological record of MG treatments. - [MG-ADL Score Tracker](/tools/mg-adl): Track MG-ADL scores to monitor symptom severity over time. ## Optional - [Sign In / Request Access](/auth): Authentication and access request. --- ## Privacy & Data Handling 1. **You own what you enter** — Your data belongs to you 2. **You control what you share** — Patient-controlled, revocable sharing 3. **We do not sell your personal health information** — MG Connect never sells personally identifiable health data 4. **No targeted ads, no insurance sharing** — MG Connect does not show targeted advertisements or share identifiable data with insurance companies 5. **Export or delete anytime** — Download or remove your data without waiting periods 6. **No automated decisions** — MG Connect organizes what you share, nothing more ### Research & Business Model With user consent (given at account creation), MG Connect may use de-identified and aggregated insights for research and commercial purposes. De-identified means your name, contact information, and any identifying details have been removed. Aggregate means data is combined across patients — not a report on any individual. This aggregate data may be used to: - Conduct and publish research on MG disease patterns and treatment outcomes - Partner with academic medical centers on longitudinal MG studies - License anonymized insights to pharmaceutical and biotech companies working on MG treatments Users can opt out of research data use at any time in account settings. --- ## Target Audience - People diagnosed with Myasthenia Gravis (generalized MG, ocular MG, seronegative MG) - Caregivers and family members of people with MG - Neurologists and healthcare providers seeking patient-generated visit summaries - Researchers interested in patient-reported experiences --- ## Frequently Asked Questions **Q: What is MG Connect?** A: MG Connect is a patient-first platform that helps people living with Myasthenia Gravis organize their health history between medical visits. It is a service of Engram Health, LLC. **Q: Who is MG Connect for?** A: MG Connect is for people living with Myasthenia Gravis, their caregivers, and clinicians who want structured patient-generated visit summaries. **Q: How does MG Connect help people with Myasthenia Gravis?** A: MG Connect helps by providing a calm, organized way to capture symptoms, treatments, and health events into a longitudinal health history — reducing the need to reconstruct history from memory during medical visits. **Q: How does caregiver support work in MG Connect?** A: Patients can optionally invite caregivers to view or assist with their record. Caregivers only see what patients share, and patients can revoke access anytime. Caregiver entries are clearly labeled. **Q: Is MG Connect a medical or clinical platform?** A: No. MG Connect is an educational and organizational platform. It does not provide medical advice, diagnosis, or treatment recommendations. It is not a medical record, clinical decision system, or replacement for emergency care. **Q: Can MG Connect diagnose Myasthenia Gravis?** A: No. MG Connect is an organizational tool, not a diagnostic service. Only qualified healthcare providers can diagnose MG. **Q: Is MG Connect affiliated with any pharmaceutical company?** A: No. MG Connect is an independent platform with no pharmaceutical sponsorship or advertising. **Q: How much does MG Connect cost?** A: MG Connect is free for patients during the early access period. **Q: Can I share my MG Connect data with my doctor?** A: Yes. Patients can generate a clinical summary (Doctor Packet) to share with healthcare providers, either digitally or as a printed PDF. **Q: What is the Emergency Card?** A: The Emergency Card is a printable one-page handover sheet containing your MG subtype, current medications, clinical flags, emergency contacts, and a list of cautionary/contraindicated drugs from the MGFA Cautionary Drug List. It includes a QR code so ER staff can scan and view the card online without needing your login credentials. **Q: What is the MG-ADL?** A: The MG-ADL (Myasthenia Gravis Activities of Daily Living) is a standard questionnaire that measures how MG symptoms affect daily activities. MG Connect uses it to help track symptom severity over time. **Q: What is the Doctor Packet?** A: The Doctor Packet is a structured clinical summary generated from your patient-reported data. It includes a clinician snapshot, MG-ADL trajectory chart, full treatment history, risk and utilization flags, your prepared questions, and pre-visit context. It uses deterministic derivation from structured data — not AI-generated prose — for clinical safety and reproducibility. **Q: How does MG Connect use my data for research?** A: With your consent, MG Connect may use de-identified and aggregated data for research and commercial purposes. This data cannot be used to identify you individually. You can opt out at any time in your account settings. --- ## Educational Topics MG Connect provides neutral, evidence-based educational information: - **MG Basics**: What is Myasthenia Gravis, types, how it affects the body - **Symptoms and Daily Life**: Common symptoms, fatigue management, energy conservation - **Treatments**: Medication approaches, immunotherapy, surgical options (neutral, no brand promotion) - **Preparing for Medical Visits**: What to bring, questions to ask, building care teams - **Caregiver Guide**: Understanding MG, recognizing crises, self-care for caregivers - **News & Research**: Curated MG research updates with patient-friendly summaries --- ## Legal MG Connect is a service of Engram Health, LLC, a Delaware limited liability company. Full legal terms are available at mymgconnect.com/legal/terms. --- ## Contact Website: https://mymgconnect.com Email: mary@mymgconnect.com --- ## Technical Details - Web application built with React and TypeScript - Mobile-responsive design with Progressive Web App (PWA) support - Secure data handling with row-level security - Patient data is encrypted at rest and in transit - No native mobile app — accessible via web browser on any device - Deterministic clinical summaries (no generative AI in patient-facing clinical outputs)