The National Hemophilia Foundation is dedicated to helping individuals live a mentally healthy life. Between chronic joint pain, frequent medical problems, and hospital visits, the bleeding disorders population is susceptible to mental health problems, including stress and depression. Taking care of the mind and spirit is as important as taking care of the body. In collaboration with our chapter network, we offer workshops on mental health that can be facilitated upon the request of chapter staff. These workshops are offered in both Spanish and English.

  • Mental Health: A Deeper Dive
  • Mental Health for Teens

 

Learn more about NHF's live workshops.

 

Mental Health Crisis Hotlines:

This list is for individuals and families affected by bleeding disorders who are interested in exploring mental health support and resources. If you or someone you care about is experiencing an immediate crisis or having thoughts of self-harm or harming others, then seek immediate assistance by calling 9-1-1, calling your healthcare provider, or going to the nearest emergency department. NHF has an additional list of mental health crisis hotlines.

Mental Health Resource Links

Bleeding Disorders Specific Resources

NHF Video: Skills for Coping with Anxiety and Depression

  • About: This video discusses how stress can affect life, how to know when life is out of balance, and what resources are available to get back on track to enjoying life and loved ones.  We explore coping strategies for depression and anxiety, ways to work with a healthcare team, and lifestyle approaches that can improve well-being. This video is based on findings from the Hemophilia Experiences, Results and Opportunities (HERO) study.
  • Video link: https://www.youtube.com/watch?v=JHGQITja9ho&t=2s

NHF Town Hall Webinar - Stress & Anxiety: Coping with COVID-19

  • About: On April 17th, 2020, experts from NHF answered your questions on how best to deal with stress in this townhall webinar titled Stress & Anxiety: Coping with COVID-19.
  • Link: https://youtu.be/w4CyXDuTiGY

Additional NHF Mental Health Videos


Articles from HEMAWARE: The Bleeding Disorders Magazine


Let’s Talk Mental Health

  • About: Let's Talk is an immersive journey through the lives of five members of the U.S. bleeding disorders community. In it they open their hearts and lives to show how we can gain strength through the struggle, and that perhaps, we aren't so different after all. Produced in partnership with Mental Health Matters Too, the film is intended to spark conversation, increase awareness, and decrease stigma. This website provides easy-to-use links, resources, and tools for connection, screening, and receiving support.
  • Link: https://letstalkmh.com/

coreHEM Mental Health Outcome Instrument

  • About: The coreHEM Mental Health Project is part of a larger project, coreHEM, which was an initiative co-led by the Green Park Collaborative (GPC), the National Hemophilia Foundation (NHF), and McMaster University. They partnered with the NHF to develop a patient-reported outcome measure that can be used to see how mental and emotional health outlook changes after a patient receives gene therapy for hemophilia.
  • Link: http://www.cmtpnet.org/green-park-collaborative/other-initiatives/other-initiatives/

Local Chapter and HTC Resources

  • About: Your local Hemophilia Treatment Center (HTC) and Chapter can offer mental health resources and support specific to individuals and families affected by bleeding disorders. At an HTC, you can find social work staff dedicated to providing mental health information and referrals, and HTCs may also offer counseling and therapy services. Local chapters may offer resources and educational opportunities on the topic of mental health.
  • Link: To find an HTC near you: https://dbdgateway.cdc.gov/HTCDirSearch.aspx

To find a chapter near you: https://www.hemophilia.org/community-resources/resources-near-you/nhf-chapters

Emergency Assistance & Hotlines

National Suicide Prevention Lifeline

  • About: A national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress. This service is available 24 hours a day, 7 days a week.
  • Website: https://suicidepreventionlifeline.org/
  • Phone: 800-273-8255

National Domestic Violence Hotline

  • About: Provides lifesaving tools and immediate support to enable victims to find safety and live lives free of abuse. Callers can expect highly trained, experienced advocates to offer compassionate support, crisis intervention information, educational services, and referral services in more than 200 languages. Visitors to this site can find information about domestic violence, online instructional materials, safety planning, local resources, and ways to support the organization.
  • Website: https://www.thehotline.org/
  • E-mail: nationaldeafhotline@adwas.org
  • Phone: 1-800-799-SAFE (7233) / 1-800-787-3224 (TTY)
Direct Support & Assistance Organizations

National Alliance on Mental Illness (NAMI)

  • About: The nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.
  • Website: https://www.nami.org/Home
  • Contact NAMI: https://www.nami.org/contact-us Phone: 800-950-6264 (Helpline), 703-524-7600 (Main Office)

Mental Health America (MHA)


Depression and Bipolar Support Alliance


The Trevor Project

  • About: The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people under 25.
  • Website: https://www.thetrevorproject.org/
  • E-mail: info@thetrevorproject.org
  • Phone: 1-866-488-7386

The Jed Foundation

  • About: Nonprofit that protects emotional health and prevents suicide for our nation’s teens and young adults. They partner with high schools and colleges to strengthen their mental health, address substance misuse, and provide suicide prevention programs and systems.
  • Website: https://www.jedfoundation.org/
  • Phone: 212-647-7544

Veterans Crisis Line

  • About: US Veterans and their families, friends, and loved ones can experience significant stress, transition, and a variety of unknowns.  Connect with the Veterans Crisis Line to reach caring, qualified responders with the Department of Veterans Affairs. Many are veterans themselves. 
  • Website: https://www.veteranscrisisline.net/
  • Phone: 1-800-273-8255 (Press 1)
Other National & International Organizations (Not Direct Assistance)

World Health Organization (WHO) Department of Mental Health and Substance Abuse

  • About: WHO works to promote mental health and prevent mental, neurological and substance use disorders. The WHO supports the expansion of access to affordable, quality care for everyone who needs it.
  • Website: https://www.who.int/mental_health/en/
  • E-mail: msb@who.int
  • Phone: +41 22 791 4385

National Institute of Mental Health (NIMH)

  • About: The lead federal agency for research on mental health disorders. It is one of the 27 institutes and centers that make up the National Institutes of Health (NIH), and the largest biomedical research agency in the world. NIH is part of the U.S. Department of Health and Human Services (HHS).
  • Website: https://www.nimh.nih.gov/index.shtml
  • E-mail: nimhinfo@nih.gov
  • Phone: 866-615-6464, 866-415-8051 (Toll Free)

The Substance Abuse and Mental Health Services Administration (SAMHSA)

  • About: The agency within the U.S. Department of Health and Human Services (HHS) that leads public health efforts to advance the behavioral health of the nation.
  • Website: https://www.samhsa.gov/
  • E-mail: SAMHSAInfo@samhsa.hhs.gov
  • Phone: 800-662-4357 (Helpline), 877-726-4727 (General Questions)

Anxiety and Depression Association of America (ADAA)

  • About: Founded in 1979, the ADAA is an international nonprofit organization dedicated to the prevention, treatment, and cure of anxiety, depression, OCD, PTSD, and co-occurring disorders through education, practice, and research.
  • Website: https://adaa.org/
  • E-mail: information@adaa.org
  • Phone: 240-485-1001

Child Mind Institute

  • About: Independent, national nonprofit dedicated to transforming the lives of children and families struggling with mental health and learning disorders. Their teams work every day to deliver the highest standards of care, advance the science of the developing brain and empower parents, professionals, and policymakers to support children when and where they need it most.
  • Website: https://childmind.org/
  • E-mail: speakup@childmind.org
  • Phone: 212.308.3118 (NYC) / 650.931.6565 (SF)

MentalHealth.gov

  • MentalHealth.gov aims to educate and guide: the general public, health and emergency preparedness professionals, policy makers, government and business leaders, school systems, and local communities.
  • Website: https://www.mentalhealth.gov/

This list is for general information only. NHF does not give medical advice and always recommends consulting a healthcare professional if you are in need of care.

This list was originally compiled by Nick Kallinicou and would not be possible without the help of the entire HANDI team.

Mental Health Education Series

When you struggle with mental health, you and your family have questions and concerns that deserve special attention. NHF’s Education Series will provide just that – quality education and meaningful community support.

The Mental Health Education Series is offered at no cost to participants and is open to individuals and families from all around the world. Below is a list of upcoming and/or recently past events.

View All NHF Events

 

Mental Health Webinars

NHF's online education provides free quality education on issues that matter to all members of the bleeding disorders community, from parents of young children to adults struggling with mental health. These webinars and webcasts bring the experience of expert providers and your peers directly to you. Watch the most recent mental health webinars listed below, or browse the complete listing.

View All Webinars on Mental Health

Wednesday Webinar Series

NHF's Wednesday Webinars are a free education series open to providers and community members. Watch the recent webinars, browse the full listing, or register to attend upcoming Wednesday Webinars, and learn about the latest in research, breakthrough developments, and more.

View All Wednesday Webinars on Mental Health

 

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