COMMUNITY RECOGNITION STATMENT - Genetic Alliance Australia & Jan Mumford

Ms JENNY AITCHISON (Maitland)—Genetic Alliance Australia is a peak umbrella group for rare genetic conditions and diseases that are so rare that they do not have their own support group. Knowledge of our genes can help to find less invasive methods of treatment, can prevent or lessen the impact of genetic conditions or diseases. This is easy when the genetic condition is easily identifiable, such as having red hair and freckles, you can wear sunscreen, or hats or avoid the sun, however, it is much harder if the condition is rare.

Genetic Alliance Australia has an extensive rare disease database representing 1400 conditions and over 3500 individuals and families affected by genetic conditions. They provide resources about education, respite care and medical services, information seminars, local and regional contacts and face-to-face counselling and Telehealth as well as networking between families to facilitate peer support. Peer support is often vital, as people with shared genetic conditions or diseases can share information about their treatment with others, that can help improve their outcomes.

Thank you to Executive Director Jan Mumford, and all at Genetic Alliance Australia for all you do for those with rare genetic conditions and diseases.