Australian Resources
Australian Blistering Diseases Foundation – ABDF is a non profit organisation that fundraises for research into life threatening blistering diseases, supporting patients and their families by providing information and a network of supporters with similar conditions.
Australian Wound Management Association – AWMA is a multidisciplinary, non profit assocation consisting of people who are committed to developing and improving wound management for all individuals through education, research, communication and networks.
Dean Clifford – Dean was born with a very serious genetic skin disorder called Epidermolysis Bullosa.You’ve probably heard of it called E.B. or cotton wool babies. E.B is life long, and incurable. When I was born,I was given a life expectancy of just 5 years.
The Royal Children’s Hospital (RCH) Melbourne
World Resources
Butterfly Girl – The story of Abbie Evans. At first glance, it is not obvious that Abbie Evans lives with a life-threatening skin disease. She is a typical teenager: moody, rebellious, irreverent, and is also strikingly beautiful. But her life is the antithesis of normal. Abbie grew up in hospitals, cared for by her protective mother and father. She then came into her own in honky tonks, selling merchandise for her father’s band. But just like any other 18 year-old, Abbie yearns for a life of her own. Butterfly Girl charts Abbie’s journey towards a new understanding of how she must balance her past with her future, her parents with her independence, and her disease with her desires. But what price must she pay for that freedom?
The Scott Ward-Schofield Memorial Fund – With support of friends and family of Scott Ward-Schofield this charity was formed to raise awareness of the illness and arrange and pay for holidays,short breaks, and special days out for sufferers and their families/carer. Until there is a cure for EB, we can provide lasting memories for these special families whilst there’s still time for them.
EBInfo World – The mother of a child with a dreadful and devastating genetic skin disorder called epidermolysis bullosa eb recessive dystrophic hallopeau siemens offers not only advice and help in taking care of these babies and children but much more.
NIAMS – USA – National Institute of Arthritus, Musculoskeletal and Skin deseases
International Children’s Palliative Care Network – Children and young people with life threatening conditions have very specific and unique palliative care needs, often different to those of adults. ICPCN shares a vision that these total needs should be met to encompass physical, emotional, spiritual and developmental aspects of care.