Finding Support: A Compilation of Emotional and Mental Health Resources in the United States

There are a number of mental health resources available for rare disease patients, families and caregivers, but accessing them or finding a provider that is the right fit can be challenging. On this page you’ll find a list of mental health resources by state, therapeutic approaches to consider when choosing a therapist or mental health provider, coping resources and hotlines to call for support. 

When looking through this list it is important to remember:

• Many mental health providers take insurance, so be sure to check whether the identified provider is in your insurance network
• There are mental health services for those with limited incomes on a sliding scale basis. Don’t forget to ask about this. 
• Telehealth services and hotlines can be a great resource and alternative for in person mental health care. 
• Finding the right fit with a mental health provider is important. When choosing a provider, it is helpful to inquire about their therapeutic approach, training, background and intervention models. And don’t forget, many people don’t find the “right fit” on the first try. If this happens to you, don’t be discouraged!

Emotional and Mental Health Resources by State:

Therapeutic Approaches:

Evidence-Based Psychotherapy: Advantages & Challenges

Cognitive Behavioral Therapy (CBT)

Psychotherapy for your Body: The role of Somatic Psychology Today

Understanding CBT vs. Somatic Psychotherapy

To Prevent Chronic Illness, Start With Mental Health

Coping Resources:

• Support System of Family and Friends. Having family and friends who you can rely on and talk to about your feelings will go a long way in helping you cope with JM.
• Support Groups. Joining a support group of people who have been through similar experiences as you can help you feel less alone.
• Attend a rare disease Conference, Walk, or Event
• Mindfulness /Meditation/Yoga/Massage
  Relaxation techniques can help with stress and depression.
• Exercise
  Physical activity can help reduce stress and alleviate depression.  Consult with a doctor before starting any exercise program.
• Practice Good Sleep Habits
  It’s important to get enough sleep, and it helps to go to sleep and wake up on a consistent schedule.
• Eat Nutritious Foods
  Nutritious foods are important for physical and mental health. Our brains function best when they receive proper fuel. Contact your doctor or hospital social worker to arrange a consultation with a nutritionist.

Building Resilience: The 7 Cs
Building Resilience in Children

Hotlines

The numbers below are provided by “Psych Central,” an independent mental health online resource run by mental health professionals.

• Suicide Lifeline:
  800-273-8255
  The Suicide Lifeline provides 24/7, free and confidential support for people in emotional distress and prevention and crisis resources for those in need.
• Crisis Text Line
  Text HOME to 741741
• TXT 4 HELP
  Text the word “safe” and your current location (address, city, state) to 4HELP (44357)   which allows you to text live with a mental health professional:  www.nationalsafeplace.org/txt-4-help
• National Help Line for Substance Abuse
  800.262.2463
• National Institute on Drug Abuse Hotline
  800.662.4357
•  Eating Disorders Awareness and Prevention
  800.931.2237
• National Youth Crisis Hotline
  800.442.HOPE (4673)

This resource was adapted from materials developed by Global Genes partner, CureJM.