Anna Hickey - Victoria
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Shane Arthur-New South Wales
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Judith Le Blanc - Western Australia
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AUSTRALIAN GORLIN SYNDROME MUTUAL SUPPORT GROUP
The Australian Gorlin Syndrome Mutual Support Group is dedicated to ensuring that people living with Gorlin Syndrome, along with their families and supporters, have access to a compassionate, understanding, and connected support network. While Gorlin Syndrome remains rare, we recognise that Gorlin Syndrome strongly affects individuals across all ages, cultures, and generations, and our group brings many years of lived experience in supporting one another through online connections, peer support, social gatherings, and associated community and medical events. Through participation in initiatives such as Rare Disease Day, Genetic Support Network of Victoria events, as well as the Australasian College of Dermatologists Patient Support Groups, we actively promote awareness, resilience, and a multidisciplinary approach to care for Gorlin Syndrome. Focusing on broadening understanding, advocacy, and reassurance, while ensuring that no one faces Gorlin Syndrome alone.
As we continue to expand our outreach through educational resources, events, and awareness materials, we warmly welcome new members. Whether you are seeking support, looking to help raise awareness, or simply need someone who understands, to listen to your experience with Gorlin Syndrome. While a small support group, with various experiences with Gorlin Syndrome, personal growth with Gorlin Syndrome can occur in more comfortable, resilient and motivating ways.
A unique but also interesting way of explaining the rarity of Gorlin Syndrome is through its history. As some Gorlin Syndrome symptoms date back to 1894, however, Mr Robert Gorlin (an Oral Pathologist and Geneticist from America) actually diagnosed these symptoms as a distinct genetic syndrome in 1960 as Gorlin Syndrome, with Dermatologist Mr Gordon Goltz. With key symptoms at the time including basal cell carcinomas, oral keratinoid cysts, and bifid ribs. With Gorlin Syndrome also known as Basal Cell Nevus Syndrome, Nevoid Basal Cell Carcinoma Syndrome, and Multiple Basal Cell Carcinoma. Some associated specialists and members of our Support Group have had the privilege of meeting Mr Robert Gorlin previously and/or his son, Dr Jed Gorlin (Haematologist). Providing an even clearer perspective of Gorlin Syndrome and its associated symptoms. A few of us have attended associated conferences internationally. Where holistic measures are taken to expand awareness of Gorlin Syndrome; researchers progressively find alternative treatments for Gorlin Syndrome; Providing greater opportunities to manage Gorlin Syndrome as accurately and comfortably as possible, and well into the future.
The Australian Gorlin Syndrome Mutual Support Group is dedicated to ensuring that people living with Gorlin Syndrome, along with their families and supporters, have access to a compassionate, understanding, and connected support network. While Gorlin Syndrome remains rare, we recognise that Gorlin Syndrome strongly affects individuals across all ages, cultures, and generations, and our group brings many years of lived experience in supporting one another through online connections, peer support, social gatherings, and associated community and medical events. Through participation in initiatives such as Rare Disease Day, Genetic Support Network of Victoria events, as well as the Australasian College of Dermatologists Patient Support Groups, we actively promote awareness, resilience, and a multidisciplinary approach to care for Gorlin Syndrome. Focusing on broadening understanding, advocacy, and reassurance, while ensuring that no one faces Gorlin Syndrome alone.
As we continue to expand our outreach through educational resources, events, and awareness materials, we warmly welcome new members. Whether you are seeking support, looking to help raise awareness, or simply need someone who understands, to listen to your experience with Gorlin Syndrome. While a small support group, with various experiences with Gorlin Syndrome, personal growth with Gorlin Syndrome can occur in more comfortable, resilient and motivating ways.
A unique but also interesting way of explaining the rarity of Gorlin Syndrome is through its history. As some Gorlin Syndrome symptoms date back to 1894, however, Mr Robert Gorlin (an Oral Pathologist and Geneticist from America) actually diagnosed these symptoms as a distinct genetic syndrome in 1960 as Gorlin Syndrome, with Dermatologist Mr Gordon Goltz. With key symptoms at the time including basal cell carcinomas, oral keratinoid cysts, and bifid ribs. With Gorlin Syndrome also known as Basal Cell Nevus Syndrome, Nevoid Basal Cell Carcinoma Syndrome, and Multiple Basal Cell Carcinoma. Some associated specialists and members of our Support Group have had the privilege of meeting Mr Robert Gorlin previously and/or his son, Dr Jed Gorlin (Haematologist). Providing an even clearer perspective of Gorlin Syndrome and its associated symptoms. A few of us have attended associated conferences internationally. Where holistic measures are taken to expand awareness of Gorlin Syndrome; researchers progressively find alternative treatments for Gorlin Syndrome; Providing greater opportunities to manage Gorlin Syndrome as accurately and comfortably as possible, and well into the future.
