Our Patient Navigator is here to guide and support individuals and families affected by Cavernous Malformation (CCM) in finding care, accessing resources, and managing day-to-day challenges. Below is an overview of how we can support you—and what falls outside our scope.
How We Can Help
We offer information, resources, and personal guidance to help you navigate life with CCM.
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Finding Specialized Medical Care – Help locating CCM specialists, including accredited Centers of Excellence, and Clinical Centers.
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Understanding Your Diagnosis – Educational resources to help you make sense of your diagnosis.
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Financial & Insurance Navigation – Connections to organizations that offer financial support, insurance guidance, and assistance understanding programs like SSI and Medicaid.
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Coping Strategies & Daily Living Support – Tools and resources for managing memory issues, executive dysfunction, fatigue, and family-related challenges.
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Emotional & Peer Support – Links to CCM-specific support groups, peer mentors, and mental health resources.
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Workplace & Disability Assistance – Information on workplace accommodations, disability benefits, and your legal rights.
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Clinical Trials & Research – Guidance on current research and clinical trial opportunities.
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Recreation & Quality of Life – Help finding accessible hobbies, social activities, and adaptive recreational programs.
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Advocacy & Self-Advocacy Tools – Resources to help you communicate with healthcare providers, insurers, schools, and employers, as well as tools for engaging in legislative advocacy.
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Travel Assistance Resources – Referrals to programs that provide support with travel, lodging, and transportation for medical care.
What We Cannot Provide
While we’re here to help however we can, some areas are beyond the scope of our services:
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Medical Advice or Treatment Decisions – We do not diagnose, prescribe, or recommend specific treatments. Always consult your healthcare provider for medical decisions.
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Direct Financial Assistance – We are unable to offer funding for care, travel, prescriptions, or personal expenses.
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Legal Services – We do not provide legal advice, but we can point you toward helpful resources.
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Emergency or Crisis Intervention – If you’re in immediate distress, please contact a crisis hotline, a mental health professional, or emergency services.
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Replacement for Your Healthcare Team – We provide information and support, but your healthcare decisions should be made in partnership with your doctors and care team.
Our Goal
No one should have to face CCM alone. We’re here to make sure you feel informed, supported, and connected every step of the way. If you have questions or need assistance, we encourage you to reach out—we’re here for you.
How to Get Started
If that sounds like it would be helpful, you can connect with a Patient Navigator by emailing us at help@alliancetocure.org.
All we need is your name and how you’d prefer we contact you—either by email or phone. If you’d like a return call, please be sure to include your phone number. You’re welcome to share a bit about your situation in your message, but that’s completely optional.
We aim to respond within one business day, so you won’t be waiting long. We’re here to support you. No one should have to walk their CCM journey alone.
