Genetic Alliance Australia (GAA) facilitates contact between families/individuals affected by the same, or similar condition, and provides information about relevant support groups both nationally and internationally.
GAA has an extensive rare disease database representing 1400 conditions and over 3500 individuals and families affected by rare genetic conditions.
GAA also deals with enquiries about services and facilitates ongoing support for individuals, families, health professionals and other interested groups. GAA facilitates Genetic Counselling and a Telehealth Nurse for those requiring health planning services. They provide educational webinars, counselling support and condition specific seminars to keep support group leaders up to date with the genomic landscape.
They encourage health services nationwide to pass on their details to clients managing rare disease.
To Donate to GAA https://www.geneticalliance.org.au/
The mission of the International Consortium for FD/MAS is to improve the care and find solutions for the unmet needs of patients and their care providers through the promotion of multi-stakeholder, collaborative, and patient-centric clinical, translational, and basic research. We have partnered with this Consortium to collaborate with researchers, doctors and patient associations from around the world to bring best practice solutions to Australians living with this rare disease. As we attend more meetings this website, social media and support groups will receive updates.
Rare Voices Australia is dedicated to working with all key stakeholders to drive the best outcomes for Australians living with a rare disease. Their mission is to provide collaborative leadership for the development and implementation of rare disease policy in Australia.
To donate to Rare Voices Australia follow this link https://rarevoices.org.au/product/donate/