GOLDENHAR UK
Empowering Lives, Embracing Differences.
About our Charity
At Goldenhar UK, we support individuals and families affected by Goldenhar syndrome and craniofacial microsomia (CFM). We provide advice, resources, and a welcoming community to help people navigate life with these conditions. We raise awareness, promote understanding, and bring people together through events, social media, and fundraising. Our mission is to empower individuals, embrace differences, and improve quality of life for everyone we support.
About The Condition
Goldenhar syndrome, also known as hemifacial microsomia or more broadly as craniofacial microsomia (CFM), is a rare congenital condition where one side of the face is underdeveloped. It typically affects the ear, jaw, and cheek, and can sometimes involve the eye. In some cases, both sides of the face are affected to varying degrees.
The condition can also include spinal abnormalities, hearing loss, and occasionally issues with the heart, kidneys, or lungs. The exact cause is not fully understood, but it’s thought to be linked to reduced blood supply during early pregnancy.
Severity varies, and treatment is tailored to each individual. It may involve surgery, hearing support, and therapies to help with breathing, speaking, or appearance.
About Our Events
At Goldenhar UK, we bring together individuals and families affected by Goldenhar syndrome through annual and regional events across the UK. Our main gathering includes a weekend of activities, socialising, and our Annual General Meeting (AGM), which drives new initiatives and strengthens our community. We also support local meetups and fundraisers by offering financial assistance, helping members connect, share experiences, and raise awareness. From museum trips to laser tag, every event is a chance to build friendships, support one another, and celebrate our shared journey.
Together we embrace the uniqueness of Goldenhar Syndrome.
Our Lived Experiences
From the viewpoints of parents/siblings of and members with Craniofacial differences
I was born with Goldenhar Syndrome, affecting the right side of my face. In my case, this means I have an underdeveloped right ear and am missing part of my jaw. I am partially deaf and have scoliosis as well. So far, I’ve had 14 surgeries to improve my condition.
This includes 4 major jaw operations, 2 ear reconstructions, a BAHA abutment surgery, spinal fusion surgery and various smaller procedures. Living with Goldenhar has been challenging at times. For example….
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