Groups: Virtual/Online

  • Adult Facial Difference Community (Facebook)

    • This is a support and networking community for adults with Facial Differences. The intent is to maintain a safe place where we can openly talk about our facial difference and how it affects our lives. Members are encouraged to post questions, concerns, frustrations, breakthroughs, victories - any issues relevant to being part of this community.

  • Facial Disfigurement (Facebook)

    • This group is to interact with people who have facial disfigurement to support and inspire. To build friendship and trust.

  • myFace Support groups

    • Support groups for those with a craniofacial difference ages 14+ as well as a group for parents of children with a craniofacial condition.

  • Young Adult Facial/Bodily Difference and Disfigurement Network (Facebook)

    • This is a group for and by young adults with facial/bodily differences and disfigurements.

Groups: In Person

  • Bells Palsey LA support group

  • Pacific Northwest Facial Paralysis Support Group

  • Facial Paralysis Foundation


  • AboutFace (Canada)

    • AboutFace was founded in 1985 as the only charity in Canada supporting individuals of every age, with any type of facial difference and their families.

  • Changing Faces (United Kingdom)

    • Changing Faces is the UK’s leading charity for everyone with a scar, mark or condition on their face or body that makes them look different. We provide advice, support and psychosocial services to children, young people and adults. We challenge discrimination and we campaign for Face Equality: a world that truly values and respects people who look different. We want a future where everyone with a visible difference on their face or body has the confidence, support and opportunity to lead the lives they want.

  • Face2Face Healing (United States)

    • Face 2 Face Healing Our mission is to build support through a community of individuals with disfigurement. We aim to promote healing through outreach, advocacy, interaction, activity, resources, and education.

  • Face Equality International

    • Face Equality International is an alliance of Non-Governmental Organizations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality’.


Print Media by Category


Personal Narrative

  • A Face for Picasso: Coming of Age with Crouzon Syndrome (2021) by Ariel Henley

    • Ariel explores beauty and identity in her young-adult memoir about resilience, sisterhood, and the strength it takes to put your life, and yourself, back together time and time again.

  • Autobiography of a Face (2016) by Lucy Grealy

    • This memoir is about the premium we put on beauty and on a woman's face in particular. It took Lucy Grealy twenty years of living with a distorted self-image and more than thirty reconstructive procedures before she could come to terms with her appearance after childhood cancer and surgery that left her jaw disfigured. As a young girl, she absorbed the searing pain of peer rejection and the paralyzing fear of never being loved.

  • Changing Faces: The Challenge of Facial Disfigurement (1997) by James Partridge

    • Written from personal experience, this book is intended for sufferers of facial and other disfigurements, and their families. The author's premise is not that the disfigured should learn just to cope, but that they should play an active and perfectly normal part in society.

  • CleftThoughts: Emotional Musings from the Facial Difference World (2017) by Joe Rutland

    • Joe Rutland shares his own experiences as well as what he's heard from others in the facial difference community.

  • Face It: Facial Disfigurement and My Fight for Face Equality (2020) by James Partridge

    • Face It tells the story of James's recovery and the work he has done ever since to support others with physical differences to cope with the isolation and discrimination.

  • Faceless (2020) by Alyssa Sheinmel

    • A novel about a girl who gets a face transplant and has to rediscover her identity.

  • Ugly: A Beautiful True Story About One Very Ugly Kid (2017) by Robert Hoge

    • A memoir about growing up disfigured that shows us that what makes us “ugly” also makes us who we are.




Resources for Parents and Supporters

  • Children With Facial Difference: A Parents' Guide (1996) by Hope Charkins

    • Families can turn to this book for the information and support they need to understand and cope with the many challenges - medical, emotional, social, educational, legal and financial -- presented by facial difference.

  • The Girl WIth Many Faces (2012) by Brenda Scott-Coleman

    • This book is specifically written to encourage children who may have some difficulties in making friends because they look different; but all children can benefit from this story.

Resources for Healthcare Providers

  • Coping with Disfigurement 1 (2008) by Suzanne Millstone

    • This is a two-part unit on helping patients to cope with the anxiety and challenges of disfigurement or looking different. Part 1 examines the causes of disfigurement, dispels myths surrounding the issue and offers guidance on understanding the feelings and behaviors of those affected and their families.

  • Coping with Disfigurement 2 (2008) by Suzanne Millstone

    • Part 2 of this unit examines ways in which nurses (and other healthcare providers) can help patients to deal with anxiety and challenges.

  • Counselling People with Disfigurement (1996) by Eileen Bradbury

    • The book addresses both the psychological and social effects of disfigurement. Key aspects of the book include developing 'helping skills', building relationships, identifying problems and working together to meet aims.