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Living With Moebius syndrome

Emotional Support

It is crucial that individuals with Moebius syndrome have a solid emotional support plan that includes talking openly with family, friends, and others about how they feel. Professional therapists are also an option for those who feel comfortable pursuing therapy. Below are resources to find ways to cope with emotions, express yourself, and find healthy ways to relieve stress.

 

 

Immediate Support

*If you are in immediate distress, please contact 988 or your local emergency number. These resources are intended to support, not replace, professional medical care.

988 Suicide & Crisis Lifeline
Call or text: 988
Website: https://988lifeline.org
Available 24/7, free and confidential

Crisis Text Line
Text HOME to 741741
Website: https://www.crisistextline.org
Available 24/7

 

Community and Identity Support

Moebius Syndrome Foundation
Website: https://moebiussyndrome.org
Phone:(844) 663-2487

Changing Faces
Website: https://www.changingfaces.org.uk
Phone: +44 (0)300 012 0275

  • Self-esteem and confidence tools

Face Equality International
Website: https://faceequalityinternational.org
Phone: Not publicly listed

AboutFace
Website: https://www.aboutface.ca
Phone: 1-800-665-3223

 

Counseling and Emotional Support

Open Path Psychotherapy Collective
Website: https://openpathcollective.org
Phone: Not publicly listed (provider-specific contact)

7 Cups
Website: https://www.7cups.com
Phone: Not available (online platform)

Give an Hour
Website: https://giveanhour.org
Phone: Not publicly listed

National Alliance on Mental Illness (NAMI)
Website: https://www.nami.org
Phone: 1-800-950-6264 (NAMI HelpLine)
Email: info@nami.org

 

Financial and Advocacy Resources

Moebius Syndrome Foundation Medical Travel Reimbursement
Website: Apply here
Phone: 1-844-663-2487

Patient Advocate Foundation
Website: https://www.patientadvocate.org
Phone: 1-800-532-5274

Angel Flight
Website: https://www.angelflight.com
Phone: Varies by region (see website for local chapter)

 

Self-Esteem and Identity Support

Creative Practices

  • Art journaling
  • Photography
    • YouTube tutorials on photography basics using a phone or other camera at iPhotography.
    • YouTube tutorials about visual photography education with Karl Taylor.

Apps

Find a Therapist

Disability, Mental Health, and Living With Moebius Syndrome

Kathleen Bogart, Ph.D., is an associate professor of psychology at Oregon State University and a member of the Moebius Syndrome Foundation Scientific Advisory Board. Dr. Bogart writes for Psychology Today and covers a variety of topics related to living with a facial difference and/or disability and mental health.

Learn MoreFind a Therapist
July 2022

Where To Go and What To Do When You Have Mental Health Concerns

Presented by Kathleen Bogart, Ph.D.

Where to Go and What to Do When You Have Mental Health Concerns Title Page
July 2022

Coping Skills for Daily Life

Presented by Rhonda Robert, Ph.D.

Coping Skills for Daily Life Title Page
July 2020

Art Journaling: A Creative Writing Session

Presented by Lisa Smant

Additional Resources

Pacing Yourself, Pushing Yourself: Managing Energy With A Rare Disease

Learning Self-advocacy With Rare Disease

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