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There are a few different organisations that support families with children who have rare conditions. Here is a list of a few you can contact to see if they can help you and your family. Some provide funding grants, some provide respite, some offer sibling support and some offer family holidays/respite camps.

The Steve Waugh Foundation 

www.stevewaughfoundation.com.au

Ronald McDonald House – Family Retreats

www.rmhc.org.au/our-programs/family-retreats

Siblings Australia

www.siblingsaustralia.org.au

Uniting Care

www.unitingcare.org.au/advocacy/disability