Women’s and Children’s Health Update: Children with rare diseases
In this episode:
– The simple things in everyday life which can have profound effects on a child with epidermolysis bullosa
– The impact of rare diseases on the wider family
– How primary care clinicians can become a meaningful part of the specialist care team
Host: Dr Terri Foran, Sexual Health Physician; Conjoint Senior Lecturer, School of Women’s and Children’s Health, UNSW
Guest: Rebecca Saad, Nurse Educator and Paediatric Clinical Nurse; Epidermolysis Bullosa with Independence Australia
Total time: 20 mins
– Australia first National Strategy Action Plan for Rare diseases, published in 2020 by the Australian Government
– Rare Voices Australia provides details of rare diseases and a comprehensive list of partner organisations that support individual rare diseases
– Debra Australia An EB specific charity that supports people living with EB in Australia
– Debra International (Clinical Practice Guidelines) for Evidence based clinical practice guidelines on EB management.
– Independence Australia – NEBDS site A federally funded scheme that provides wound care products, with a co-payment system for any person living with EB in Australia. Education, wound care services, and clinical support are provided through the NEBDS scheme. There is a list of articles, management plans, and videos located under the Resources tab.
Each state has an EB Specialist hospital, these hospitals are listed on the NEBDS website, these hospitals will often have great fact sheets about the specific disease they treat.
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