Offering Support on World Mental Health Day

October 6, 2023

World Mental Health Day is Tuesday, October 10th. This year’s theme is “Mental health is a human right” and for our the rare disease community, that sentiment is even more meaningful. Over the past year, we’ve heard stories about how air travel is so difficult when you have to travel with a wheelchair, or navigating the healthcare system to find a diagnosis or treatment.

How can Global Genes help support the mental health of our community? As part of the Community and Capacity building track, Supporting Your Rare Community’s Mental Health was one of the panel sessions during the RARE Advocacy Summit in San Diego California, September 19-21, 2023.


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

More 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

General resources

If you are struggling with your mental health, there are a number of resources that can help you with next steps. Your primary care physician can help you with next steps, including deciding if medication, therapy, or a combination of the two will be helpful.
Use Psychology Today’s Therapy Directory to search for mental health professionals in your area.

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.

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