Mental Health Resources for the Rare Disease Community

Those in the rare disease community may experience a variety of mental health issues, ranging from anxiety and stress to depression. The one thing that is the same in the rare community as it is outside the rare community is how to tackle mental health problems. The key is identifying that mental health conditions exist, and then finding ways to remedy those feelings, whether that it may be through therapy, support groups, medications, and talking to fellow patients and caregivers.

Managing mental health is an important part of the treatment process for someone diagnosed with a rare disease and those who care for them. Treatments have been proven to be more effective when the mind is in a good place, and spirits are lifted. The science is unknown, but the results are undeniable.

Finding support: When looking for a therapist, it may be helpful to find someone who has experience treating people with chronic illness and/or medical trauma. Additionally, therapists who are familiar with Acceptance and Commitment Therapy and Dialectical Behavior Therapy may have a better understanding of people who are dealing with serious illness and related psychological burdens.

• Psychology Today – Therapist search tool, magazine and information
• NAMI – The National Alliance on Mental Illness (NAMI) is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.
  • Support & Education (Spanish Available) – If you or someone you know is struggling, you are not alone. There are many supports, services and treatment options that may help.
  • Find your Local NAMI (Spanish Available) – There are more than 600 NAMI State Organizations and Affiliates across the country. Many NAMI affiliates offer an array of free support and education programs.
• Rareminds – provide professional counselling and wellbeing resources, training & information for rare disease patient groups and organizations.
• Center for Chronic Illness – (Spanish Available) CCI promotes well-being and decreases isolation for those impacted by chronic illness through support and education.
• Choosing Therapy – an online therapist directory that serves users across the U.S.
• Local Universities sometimes have a Graduate Program which will provide low/no cost counseling.

Caregivers:

• Give an Hour – Provides no-cost counseling through a network of volunteer mental health professionals and empower community through collaborative programs, peer support and educational opportunities that benefit both clients and providers.
• Parent to Parent – Through a one-to-one “match,” experienced Support Parents provide emotional support to families of individuals with special health care needs and assist them in finding information and resources.
• Rare Caregivers Guidebook – The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illness. – The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.

Peer Support Training from Give an Hour

Give an Hour TIPS (Trauma Informed Peer Support) Training is an evidence informed peer support training. These sessions are virtual and held on Zoom. In this training, Give an Hour talks about what peer support is, some challenges you may face and how to care for yourself while you are caring for others. After this training, if you’re interested in becoming a group facilitator for your rare disease community or organization you can do so with Give an Hour. This would include one additional hour of training.

Learn more

Contact Give an Hour

Rare Caregiver Peer Support Groups From Give an Hour 

Get no-cost support from those who understand. The Rare Caregivers Peer Support Group sessions are held every 2 weeks. Each session is focused on a specific topic relevant to the rare disease caregiver journey and will be led by a trained beer support lead who will offer shared practical skills and knowledge. This group is open to Rare Caregivers and one’s Support System (family, friends, co-workers, etc.).

Register for a peer support group

Mental Health Tips from Give an Hour

Digestible resources for self-care and wellness support

Rare Disease-Specific Resources

We Are Brave Together Is Passionate About the Mental Health of Caregivers

Mental health and self care resources for rare patients and caregivers

Nikki McIntosh, Founder of Rare Mamas, shared her thoughts on caregiver, self-care, and mental health.

RARE Mom & Advocate Billie Short shares: Creating Care for the Caregiver Five Minutes at a Time

RARE Advocacy Summit Sessions about Mental Health

Several sessions at previous Patient Advocacy Summits addresses mental health and self-care. Here are the links to the session videos:

Preventing Caregiver Burnout: 2022 Patient Advocacy Summit

Grieving as a Community: 2022 Patient Advocacy Summit

Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression

Building a Coping Toolbox as a Rare Disease Parent or Caregiver

Beyond the “Impossible Thing” – Breaking Barriers and Redefining Strength

Understanding the Emotional Health of Rare Disease Patients

Global Genes Resources & Toolkits:

• Mental Health and Self Care Resources for Rare Patients and Caregivers
• Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression

Additional Resources & Toolkits:

• MedlinePlus – Mental Health
• NIH – National Institute of Mental Health
• NIH – Emotional Wellness Toolkit
• American Foundation for Suicide Prevention (AFSP)

Information & Articles:

• Living with a Rare Condition: The Effect on Mental Health – Rare Disease UK
• “It’s not all in my head!” – The Complex Relationship Between Rare Diseases and Mental Health Problems – Orphanet Journal of Rare Diseases
• Rare Diseases: A Psychiatric Concern? – Psychiatry Advisor
• Rare Disease and Mental Health – Rare Disease Awareness Acromegaly Support
• Best Online Therapy Services of 2023 – Detailed review of the best online therapy services.
• Best Online Psychiatrist Options: For those who may need medication management in addition to therapy, a list of the best online psychiatry services

We’d also recommend using the search term “mental health” in our RARE Resource Hub to find other relevant resources.

General resources

If you, or someone you know is in crisis, please seek help immediately. Some resources for 24-hour crisis services:

The National Suicide Prevention Lifeline’s 24 hour toll-free crisis hotline, 1.800.273.TALK (1.800.273.8255) can put you into contact with your local crisis center that can tell you where to seek immediate help in your area.

Text “MHA” to 741-741 to speak with a trained crisis counselor at Crisis Text Line.