Find all needed information about Rare Disease Support Australia. Below you can see links where you can find everything you want to know about Rare Disease Support Australia.
https://www.rarevoices.org.au/
About Rare Voices Australia. Rare Voices Australia (RVA) is a national, not-for-profit organisation established in 2012 with a vision to be ‘the unified voice for ALL Australians living with a rare disease’. RVA is Australia’s national alliance advocating for those who live with a rare disease.
https://rarediseases.org/organizations/association-of-genetic-support-of-australasia-inc/
Genetic Alliance Australia facilitates support for those affected directly or indirectly by genetic/rare conditions throughout Australasia. We are the peak umbrella organisation for conditions so rare that no support group exists.
https://hspersunite.org.au/rare-diseases-in-australia/
‘There is currently no great awareness of rare diseases in Australia,’ says Karen Gair, CEO of SMILE. ‘We estimate the number of rare disease patients in Australia to be at least 1.2 million, which is the same number as patients suffering from diabetes.
https://rarediseases.org/organizations/sarcoidosis-lyme-disease-support-australia/
Description Sarcoidosis and Lyme Disease Support Group Australia is a voluntary organization established for sufferers, families and caregivers affected by sarcoidosis and Lyme disease.
https://rarediseases.info.nih.gov/guides/pages/120/support-for-patients-and-families
Support for Patients and Families Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives.
https://www.rarediseaseday.org/country/au/australia
Rare Disease Day in Australia . Australia first participated in Rare Disease Day in 2009 and have since hosted many exciting events to raise awareness among the general public. These have taken place all over the country from Perth to Canberra and Sydney. Among them include an Indian dancing event, an online silent art auction, fun runs, public ...
https://www.rarevoices.org.au/page/26/a-z-of-support-organisations
Below is an A-Z list of rare disease patient organisations. Please note that RVA does not necessarily endorse or monitor each group's operational governance. If you have searched our A-Z directory list of rare disease patient organisations and can't find a support group, it may be that a group doesn't currently exist that suits your needs.
https://www.recordatirarediseases.com/us/support
A: A rare disease, also known as an orphan disease, affects a small percentage of the population or fewer than 200,000 Americans. People living with rare diseases face a number of challenges, including long delays in diagnosis, limited public and/or physician awareness, lack of treatment options, and resulting social and financial burdens.
http://www.geneticalliance.org.au/
About us. Genetic Alliance Australia is a tax-deductible registered charity, was formed in 1988 to provide peer support and information for individuals and families affected by a rare genetic condition/rare disease.
https://rarediseaseday.org/
The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to …
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