We are regularly out on the web searching for relevant information and best practice techniques for treatments and care. When we find a website that we think will be relevant to our members, we list it here for you. From the list below choose one of our weblink topics, then select a URL to visit:
Specialist Shoes for EB Patients
The original concept of what Pedors Shoes should be is still its core value today. A Pedors shoe should be able to accommodate the most demanding foot.
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.
Cristina Perez. RDEB - My name is Cristina and I'm 23 years old. I was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB) which is one of the most severe forms of EB.
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.
USA - National Institute of Arthritus, Musculoskeletal and Skin deseases
Classification of the various forms of epidermolysis bullosa (EB)
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.
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 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.
Nu Skin leads the skin care industry with scientifically advanced ingredient technologies and skin beneficial formulas comprised of only the best ingredients.
Molnlycke Health Care Group is one of the world´s leading providers of single-use surgical and wound care solutions to the professional health care sector.
Vivienne and Mandy at Big Fish organise conferences, seminars, special events, road shows and parties. They specialise in team building, marketing and communications, product launches, training and incentive programmes. Big Fish are sponsors who have supported DEBRA Australia by kindly donating their time and resources to help organise past National EB Conferences.Memery Public Relations
memery is everything a digital agency could be and everything a PR firm should be. We help you develop strategies to engage with your audiences, wherever they are; online, off-line, above the line and below the line. We get people talking about your brand. We make you newsworthy. We listen to conversations happening online and make you a part of the buzz.
Blue Star is a trans-Tasman communications group, providing market-leading solutions across sheetfed, digital and web printing, print management, direct mail and national logistics operations. BlueStar kindly designed and printed the 2010 DEBRA Australia calendar and prints many of our marketing materials.
Reliance Medical P/L
Reliance Medical is a specialist wound care company. It is Australian owned and caters specifically for growing clinical and economical health needs in a broad range of disciplines across the health care sectors. All the Reliance Medical wound dressings are fully TGA approved, CE marked, Latex free and supported by new clinical papers.
The Link Healthcare team thrives on direct positive feedback from patients who gain quality of life improvement through the use of their products. In line with this vision, Link Healthcare kindly pay for DEBRA Australia’s teleconference bills, which makes communication and planning between states possible.
Xantha Maree Foundation
The Xantha Maree Foundation raises money to help families who suffer with EB, as well as towards research for a cure. Please help them to help other butterfly babies.
The nib foundation has been established to fund programs aimed at improving the health and wellbeing of all Australians, with a particular emphasis on those living in the Hunter region of NSW. They are committed to partnering with leading organisations to make a measurable difference to the health issues they seek to address. nib foundation awarded DEBRA Australia a grant of $100,000 for 2010 to fund 2 part time EB nurses.
DEBRA's Global Organisations