Mental health and self care resources for rare patients and caregivers

May 13, 2021

Patients and caregivers living with rare diseases experience higher levels of stress, anxiety and depression. Global Genes created this list of mental health and self-care resources to help rare community members get the support they need to cope with these complex, chronic and often life-threatening conditions. 

Mental Health

The Biology of Relationships

Centers for Disease Control & Prevention: Coping with Stress

Chan Zuckerberg Initiative: Self Care: Practices for Resilience in the Moment

Chan Zuckerberg Initiative: Building Resilience in Times of Crisis and Transformation

Everyday Health: Boxed In: COVID-19 and Your Mental Health

Happy: Online Mental Health Support

Mayo Clinic on Mental Illness

NAMI: COVID-19 Guide, Information and Resources

Online Counseling Programs: Managing Mental Health During the Coronavirus Pandemic

Osteogenesis Imperfecta Foundation: Mental Health and Self Care During COVID-19

Resounding Joy: Musical Therapy Classes for Medically Fragile Children Monday-Friday 10AM-10:45AM PT

SleepHub: Sleep Talk- Talking All Things Sleep

Umttr (Your Life Matters)



American Psychiatry Association

Center for Chronic Illness

Medline Plus – Mental Health

Mental Health Resources (MHR)

National Alliance on Mental Illness (NAMI)

The National Federation of Families for Children’s Mental Health

US Department of Health and Human Services – Mental Health

World Health Organization (Project Atlas)


Mental Health Resources related to specific population

American Psychological Association – Sexual Orientation and Gender Identity

Centers for Disease Control and Prevention (CDC) – LGBT Youth

GLBT Near Me

Let’s Talk – film on Rare Disease and Mental Health

LGBT National Help Center

Mental Health Matter Too

National Alliance on Mental Illness (NAMI) – LGBTQ

The Trevor Project


Military / Veterans

MindWise – Military and Family Screenings

National Alliance on Mental Illness (NAMI) – Veterans and Active Duty

US Department of Veterans Affairs (VS) – Mental Health



U.S. Department of Health & Human Services – Office of Minority Health



National Council on Aging – Behavioral Health

National Institute on Aging – Health Information



Office on Women’s Health – Mental Health Resources

World Health Organization (WHO) – Gender and Women’s Health


Young Adults (Youth, Teens, School and College Students)

Dave Nee Foundation – LawLifeline

The Jed Foundation

UCLA – Center for Mental Health in Schools and Student Learning Support

U.S. Department of Health & Human Services – Mental Health in Adolescents

U.S. Government – Youth Mental Health



Getting Help

Find Treatment

Mental Health America

National Council for Behavioral Health



American Psychological Association Help Center

Psychology Today: Find a Therapist

Safe Horizon

Teen Health & Wellness


Parent Support

Angel Aid Cares


Organizational Support

United Healthcare Children’s Foundation


Caregiver Support

Angel Aid Cares

Caregiver Action Network

National Alliance for Caregiving


Sibling Support

Courageous Parents Network

Sibling Support Project

Siblings with a Mission



Additional Resources

The Mighty

Patient worthy

Rare Revolution Magazine


Native Americans and Alaska Natives

Center for Native American Youth

Native Americans Health Center

Tribal Affairs, SAMHSA


All My Relations


African American Mental Health Resources

African American Mental Health (NAMI)

African American Mental Health Providers

African American – Minatory Mental and Behavioral Health

Black Emotional and Mental Health

Black Emotional and Mental Health Collective

Black Mental Health Alliance

Ethel’s Club

Mental Health Resources for the African American Community

Sistah Afya Community Mental Wellness

Therapy for Black Girls


Black Therapist Podcast

Black Mental Matters Podcast

Fireflies unite with Kea

Therapy for Black Girls Podcast

Wellness in Color


LatinX/Hispanic Community Resources

Hispanic Community Counseling Services

LatinX/Hispanic Communities and Mental Health

LatinX/Hispanic Communities and Mental Health – NAMI

LatinX Therapy

National Alliance for Hispanic Health

Therapy for LatinX


LatinX Therapy Podcast


Asian Americans and Pacific Islanders Resources

Asian American Psychological Association

Asian Counseling and Referral Service

Asians Do Therapy

Asian Mental Health Collective

Asian Pacific Counseling and Treatment Centers

Cambodian Association of America

National Asian American Pacific Islander Mental Health Association

South Asian Mental Health – Young Adults


Asians Do Therapy Podcast

Korean American Perspectives Podcast



Mental Health Additional Resources


After the Shock

The Caregiver’s Secret

The Still Point of the Turning World


BIPOC Therapists: Empowering the Community Through Education and Awareness

Disability is Diversity

Mental Health Podcasts

21 Mental Health Podcasts That Will Teach You Something New

The Anxiety Podcast

The Hilarious World of Depression

Meditation Minis

The Positive Psychology Podcast

The Trauma Therapist Podcast




Delightful App



Insight Timer

Simple Habit

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