Caring for someone with pheochromocytoma or paraganglioma

Caring for someone with pheochromocytoma or paraganglioma (pheo/para) — or grieving the loss of a loved one — can be overwhelming and isolating. Families and caregivers often carry invisible burdens while navigating complex medical decisions, uncertainty, and profound emotional strain.

This Caregiver Resource page is dedicated in loving memory of David A. Stevens, and made possible through a generous gift from his wife, Bethel Stevens, funded by proceeds from her deeply compassionate memoir, Not a Cinderella Story: A Powerful Story of Love, Loss, and Perseverance When Life Goes Off Script, written after losing David to pheo/para. Through her courage, generosity, and willingness to share her story, Bethel honors David’s life while helping ensure other caregivers and families feel seen, supported, and less alone.

We are honored to share a video from Bethel extending a warm welcome to our Caregiver Resource page:

The Pheo Para Alliance is committed to supporting not only patients, but also the families, caregivers, and loved ones who walk beside them. This page offers trusted resources, reflections, and community support for those caring for someone with pheo or para, as well as for those navigating grief and loss.

Caregiver Support Meeting – 2nd Monday of the Month @ 4pm PST/7pm ET

We will have virtual, monthly caregiver support meetings on the 2nd Monday of the month at 4pm PST/7pm ET. Click here to register through Zoom!

The next meeting is on Monday, April 13th.

*You do not need to register each time. Your first registration gives you access to all future meetings.

The Role of Caregiver: The Ever Changing Role of a Caregiver

A sister and mother shares her journey during the Pheo Para International conference.

CaregiverAction.org – Caregiver Resources
The Caregiving Action Network is a nonprofit with education, peer support, tools, and strategies for family caregivers across many conditions (including rare disease and cancer-related caregiving).

Practical Guides & Education
American Cancer Society – Caregiver Resource Guide
What it offers: Comprehensive downloadable guide to help caregivers develop skills, care for themselves, and understand their loved one’s journey.

CancerCare – Caregiving Resources & Articles
Helpful articles on caregiving topics such as coping, communication, stress management, and holiday survival — curated by oncology social workers.

Grief & Bereavement Support
Not a Cinderella Story: A Powerful Story of Love, Loss, and Perseverance When Life Goes Off Script by Bethel Stevens
Not a Cinderella Story is a deeply honest memoir about love, caregiving, and grief following the illness and loss of Bethel Stevens’ husband, David, who passed away from pheochromocytoma/paraganglioma (pheo/para). Blending personal reflection with insights from neuroscience, the book offers comfort, validation, and hope to caregivers and those navigating loss, while honoring David’s legacy and supporting the Pheo Para community.

CancerCare – Bereavement Support Group
A structured bereavement support group open to people who have lost a loved one — providing a safe space to share and heal.