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
Centers for Disease Control & Prevention: Managing Stress and Anxiety During COVID-19
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
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
Organizations
American Psychiatry Association
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
Let’s Talk – film on Rare Disease and Mental Health
National Alliance on Mental Illness (NAMI) – LGBTQ
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
Minorities
U.S. Department of Health & Human Services – Office of Minority Health
Seniors
National Council on Aging – Behavioral Health
National Institute on Aging – Health Information
Women
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
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
National Council for Behavioral Health
Hotlines
American Psychological Association Help Center
Psychology Today: Find a Therapist
Parent Support
Organizational Support
United Healthcare Children’s Foundation
Caregiver Support
National Alliance for Caregiving
Sibling Support
UK: https://rainbowtrust.org.uk/support-for-families/sibling-support
Additional Resources
Native Americans and Alaska Natives
Center for Native American Youth
Native Americans Health Center
Podcasts
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
Mental Health Resources for the African American Community
Sistah Afya Community Mental Wellness
Podcasts
Therapy for Black Girls Podcast
LatinX/Hispanic Community Resources
American Psychiatric Association – Working with Latino Patients
Hispanic Community Counseling Services
LatinX/Hispanic Communities and Mental Health
LatinX/Hispanic Communities and Mental Health – NAMI
National Alliance for Hispanic Health
Podcasts
Asian Americans and Pacific Islanders Resources
Asian American Psychological Association
Asian Counseling and Referral Service
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
Podcasts
Korean American Perspectives Podcast
Mental Health Additional Resources
Books
The Still Point of the Turning World
Blogs
Mental Health Podcasts
21 Mental Health Podcasts That Will Teach You Something New
The Hilarious World of Depression
The Positive Psychology Podcast
Apps
Stay Connected
Sign up for updates straight to your inbox.