Dialog Box


Rare disease peak bodies



The Sanfilippo Children's Foundation is members of and actively works with the following organisations. We encourage families to connect with or become members of the following rare disease groups:

 Global Genes is one of the leading rare disease advocacy organisations in the world uniting the rare community of patients, caregivers, advocates and clinicians. The non-profit organisation, which began as a grassroots movementin 2009 with a few rare disease parent advocates and foundatons, has since grown to over 500 global organisations. For more:


Rare Voices Australia (RVA) is Australia's National Alliance for rare diseases. It is a not-for-profit, non-Government registered company advocating for Australians impacted by rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system for those with rare diseases. For more:




 NORD is a US patient advocacy organisation dedicated to individuals with rare diseases and affiliated organisations. NORD, along with its more than 260 patient organisation members, is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and patient services. For more:

Genetic Alliance Australia is a peak umbrella group for rare genetic conditions so rare they don't have their own support group. Genetic Alliance Australia facilitates contact between families affected by the same, or similar condition, and provides information about relevant support groups. For more:

EURODIS is a non-government patient driven alliance of patient organisations repsresenting 745 rare disease patient organisations in 65 countries. EURODIS is the voice of 30 million people affected by rare diseases. For more:




MPS Societies 

 The National MPS Society exists to find treatments and cures for MPS and related diseases. It provides hope and support for affected individuals and their families through research, advocacy and awareness of these devastating disorders. For more:





The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS and related diseases throughout the UK. For more:


The Australian MPS Society is a non-profit organisation formed by parents, relatives and friends of those suffering from a range of rare genetic disorders known collectively as the mucopolysaccharide (or MPS) diseases. For more: