Mental Health Toolkit
Rooted in Wellness.
Mental Health Resources to Support the Rare Disease Community
Caring for Your Mental and Emotional Health
Living with a rare disease can bring emotional challenges that are often unseen. Stress, grief, uncertainty, caregiver fatigue, anxiety, medical trauma, identity changes, and feelings of isolation are all experiences many in our community share.
At Patient Health Alliance, we believe mental wellness is an important part of whole-person care. In collaboration with Give An Hour we are proud to offer downloadable resources designed to support emotional well-being, coping, communication, and connection while navigating the challenges of the rare disease journey.
Together, Give An Hour and Patient Health Alliance approach mental health and emotional support informed by the knowledge, insight, and wisdom gained through lived experience.
Whatever your journey looks like, we are here to walk alongside you.
Your Mental Health Toolkit
Tools, connection, and support for the emotional realities of rare disease.
Tools for Those Living with NMOSD, MOGAD, and related Conditions
For Caregivers, Friends, and Family
Self-Compassion and Self-Care For All
Mental Health and Rare Disease Video Series
Julie Wells of Give An Hour explores mental health strategies and tools for coping, healing, and connection while navigating rare disease. Julie brings more than 30 years of nonprofit leadership focused on mental health, community connection, and supporting underserved populations. Through both her professional work and personal experience, she is deeply committed to empowering and uplifting the rare disease community.
Crisis Support & Additional Mental Health Resources
If you or someone you love is struggling emotionally or experiencing distress, support is available.
- Call 911 for emergencies or immediate safety concerns.
- National Suicide and Crisis Lifeline: call or text 988 for free, confidential support 24 hours a day, 7 days a week, or visit 988lifeline.org.
- Mental Health Hotline: (866) 903-3787
- National Alliance on Mental Illness (NAMI): nami.org
- Consider speaking with a mental health professional, counselor, therapist, or social worker familiar with chronic illness or caregiver support.
Additional Ways to Find Support
Mental wellness looks different for everyone. For some, support comes through conversation. For others, it comes through creativity, education, peer connection, or simply knowing someone understands.
Patient Health Alliance offers additional opportunities to support emotional wellness, belonging, and connection.
Artistry iNMOtion
Creative wellness workshops designed to support emotional well-being through art, mindfulness, and self-expression in a welcoming, judgment-free space. Programs are available for both individuals and caregivers, with adaptive tools available for accessibility.
PHA Support Groups
Find connection with others who understand the lived experience of navigating NMOSD, MOGAD, and rare neuroimmune disease. Peer support can help reduce feelings of isolation and create space for shared understanding, encouragement, and hope.
The NMOSD Helpline
Whether you need resources, support, or simply someone who understands, our team is here to listen and help connect you to the information you need.
PHA Patient Education Days
Connection matters. Join patients, caregivers, clinicians, and advocates for meaningful opportunities to learn, ask questions, and spend time with others who truly understand the rare disease journey.
Produced in partnership with
This toolkit was co-developed by Patient Health Alliance in collaboration with Give an Hour, a national nonprofit whose trauma-informed mental health frameworks informed the structure and tools included.
