Our Commitment to
Mental Health & Well-Being

Global Genes understands the challenges and obstacles that the rare disease community faces when it comes to mental health and emotional well-being, and we are here to help.

This is due not only to the physical symptoms of the condition, but also to a range of other factors including but not limited to:

* lack of disease awareness/understanding

* loss of independence/ increased reliance on others, lack of access to support

* care coordination pressures or demands

* financial burden

* societal isolation

* uncertainty over disease progression/flare ups, future and anticipatory grief, ambiguous grief and compound grief

Mental Health & Well-Being Resources

Those in the rare disease community may experience a variety of mental health and emotional well-being challenges. Learn about the most common mental health challenges in the rare disease community, and resources that are available.

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RARE Concierge

Through RARE Concierge, you can reach out with your unique rare disease-related questions and get information relevant to your needs. Our Patient Services Guides understand what it is like to navigate the complex world of rare diseases and are here to help. This service is free.

Contact a Patient Services Guide

Addressing and Managing Pain: Resources for Patients Who Have Pain

Managing chronic pain can be challenging for rare diseases patients and their caregivers, but these resources may help patients and their caregivers better manage and address pain. 

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Depression and Anxiety: Understanding the Signs and Symptoms and Getting Help

Having a chronic and rare disease is a challenging experience, so it is understandable that mental health challenges may occur within the rare disease community.

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Getting Help & Finding the Right Fit: Emotional and Mental Health Resources

Many resources are available for mental health care, but it is important to carefully research them, access them, and follow up with viable providers. Mental health services are available for those with limited incomes on a sliding scale basis.

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Finding Support in the U.S. by state

There are a number of mental health resources available for rare disease patients, families and caregivers, and those resources may vary based on which state you live in.

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Mental Health Resources for Caregivers of Children Newly Diagnosed with a Rare Condition

As the parent of a newly diagnosed child, feeling overwhelmed and worried are normal reactions, so you might want and need support from others who have been, or still are, on this same journey.

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Signs of Depression and Anxiety in Children and Teens Living with a Rare Condition

Kids with rare diseases experience depression and anxiety at 2-3 times a higher rate than their peers. Understanding the common signs and symptoms of depression and anxiety may allow you to better support your child.

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Quick and Simple Strategies to Help You and Your Family Reset and Recharge

As a rare disease caregiver or care partner, you may be feeling increasing pressure to do it all. As a result, the time you spend caring for yourself and recharging your internal battery is likely minimal at most, which unfortunately is hindering your ability to take the best care of those who rely on you most. 

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Need Help Now?

Global Genes does not provide emergency services. Here are some resources for immediate help:

In the United States:
Call the National Suicide & Crisis Lifeline at 988
OR text SIGNS to 741741 for the Crisis Text Line.
Both services are free and available 24/7.

Thank you to Give an Hour for compiling this list.

Veterans Crisis Line
Dial 988, Press 1
TTY: 1-800-799-4889

International Association For Suicide Prevention (IASP)

DSN: 312-560-1110

The National Alliance on Mental Illness (NAMI) HelpLine can be reached Monday through Friday, 10 a.m. – 10 p.m., ET. Call 1-800-950-NAMI (6264), text “HelpLine” to 62640 or email [email protected]

RARE Concierge

Those in the rare disease community may experience a variety of mental health and emotional well-being challenges. Learn more about the most common mental health challenges someone in the rare disease community may experience and what resources are available.

Our Patient Services Guides are here to provide resources, information, and connections – to be with you on your rare disease journey. If you have specific questions about mental health for you or a loved one, the Patient Services Guides can find resources to help you.

Brad Thompson,
Founder, The Hali Project