ADVOCATES

Global Genes is one of the leading rare disease patient advocacy organisations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon. What began as a grass roots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations..

The ALDS is a voluntary, non-profit organisation that helps raise funds to provide counselling, support and information to families and individuals affected by leukodystrophy. The ALDS recognises that managing a leukodystrophy is not just about the clinical side of things. There are a lot of other considerations, including the need for understanding, support, family counselling, financial considerations and many more.

The Global Leukodystrophy InitiAtive (GLIA) aims to accelerate the discovery of novel variations responsible for paediatric white matter disorders and to translate these findings into clinical treatments.

Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services. Very Special Kids is a children’s charity that helps more than 800 families across Victoria who have a child with a life-threatening condition with ongoing support from diagnosis all the way through to recovery or bereavement. Sadly, many of the children we care for will not reach adulthood.