Navigating EHE

Practical resources for living with EHE

Living with EHE means learning as you go – new terms, new decisions, new challenges, and new routines. You do not have to figure it out alone. These resources are provided to help you navigate your EHE journey, whether you are newly diagnosed or facing a new chapter. For resources from across the cancer community for financial assistance, mental health, and more, visit Additional Resources.

Start Here

Newly Diagnosed

Understand important first steps, what to ask your doctor, and how to find your footing in those first few weeks.

Build Your Care Team

Find Expert Care

EHE calls for specialized expertise. Our Provider Directory helps you find doctors experienced in EHE.

Get Organized

Care Planning

Tools for organizing your care: preparing for appointments and understanding shared decision-making with your care team.

You Are Part of the Story

For Caregivers

Caring for someone with EHE changes your life too. Find resources and support built for caregivers and family members.

Know Your Options

Treatment & Management

Understand the clinical care options for EHE, from active surveillance to surgery and systemic therapy.

woman holding medical bills in front of her computer

Facing an Appeal

Navigating Insurance

Tools and guidance for understanding insurance authorizations, denials, and appeals.

EHE Care Plan & Toolkit

Shared decision-making works best when you walk into every appointment prepared. This guide gives you questions to ask your care team, along with usedful tools to track appointments, symptoms, scans and imaging, and medications, all in one place.

Bring it to every visit, and use it to make informed care decisions with your team.

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