About DEBRA Australia
DEBRA Australia is a not for profit volunteer based organisation that does not receive any direct Government funding and works tirelessly to support those living with a group of rare skin blistering disease called Epidermolysis Bullosa (EB). DEBRA Australia assists in improving the lives of children and adults living with EB, the debilitating and sometimes fatal condition, by providing necessary support services, medical supplies, aids and equipment, support services, assistance with transition to independent living and research focusing on different aspects of EB.
A world where no one suffers from the painful genetic skin condition Epidermolysis Bullosa (EB).
To ensure that people living with EB have access to the best quality support and medical care, whilst also driving the effective development of treatments and cure for EB. To raise awareness and understanding of EB amongst health professionals and the general public within Australia.
Primary Objectives of the Organisation
(*All points of equal importance)
- EB is a rare genetic disorder causing painful internal mucosal blistering and external cutaneous blistering, likened to third degree burns.
- DEBRA is a volunteer based organisation funded by donations and grants.
- DEBRA aims to improve the lives of children and adults living with EB, a debilitating and sometimes fatal condition, by providing necessary support services, home aids and information to individuals and their families.
- DEBRA’s programs support and educate families living with EB, health professionals, communities and the general public.
- DEBRA funds Specialised EB Nurses in hospital and provides in home nursing care for families on a national basis.
- DEBRA supports and encourages EB research.
- DEBRA Australia contributes to and supports activities of DEBRA International.
DEBRA Australia Values
- Focused: DEBRA is an individual and family-focused, EB service organisation
- Compassionate: DEBRA supports EB families with compassion, respect and empathy
- Ethical: DEBRA is a professional, responsible, honest and ethical organisation
- Accountable: DEBRA is accountable to its members and to the wider community
- Collaborative: DEBRA builds partnerships and networks to collaborate with stakeholders and the wider community
- Impactful: DEBRA seeks to achieve positive impacts on behalf of the EB community.
The DEBRA Australia Board and Staff attending the 2018 Planning Session
DEBRA Australia Services
In Home Nursing Support
DEBRA Australia with the help of generous donors have been funding the in home nursing support program for our most severe EB individuals nationally. Most families involved in this care have found benefits in having some respite and additional support. The program offers In Home Nursing Support which includes a registered nurse for 2 visits per week / 3 hour sessions, who will provide direct wound care, bath and dressing changes. This program focuses on support within the family home in aim to relieve the stress and on-going, high demand of EB care. This program is available to all EB patients who require extra assistance including both adults and children living with EB.
EB Nurse Program
We are pleased to have DEBRA Australia funded dedicated EB Nurses in Melbourne, Brisbane and Sydney/. The aim of these roles is to facilitate better patient and family support as well as organize multidisciplinary EB clinics for these patients. In addition, we support nurse education nationally, including Adelaide, and we organize annual health education seminar for nurses and health professionals on topics relevant to EB patient needs. Lastly, we support education and training of nurses by funding attendance to specialized EB conferences and workshops globally ensuring our EB nurses have latest knowledge and resources.
Our EB Nurses are particularly dedicated and committed to providing much needed support and facilitation of the EB Clinics at the hospitals and externally.
DEBRA Australia also supports research activities aimed at improving the health and wellbeing of children and adults with Epidermolysis Bullosa (EB), in any of DEBRA’s priority research areas. DEBRA Australia offers two grants of up to AUD $40,000 each annually. You can find out more about our Research Programs here.
Family Support Program
Family support program is an important part of our service for EB families. We have a passionate and dedicated Family support co-ordinator who liaises with families and offers support at time of need and links families to different services available in each state. This program also encompasses applications aimed at supporting the families with EB by funding their medical equipment, dressings which are not part of the government scheme and other applications aimed at improving patient’s quality of life.
DEBRA Australia ABN: 727 045 155 71
DEBRA Australia Ltd ACN: 157 774 546 (as trustee)
Address: PO Box 226, Pittsworth QLD 4356
Phone: +61 427 937 003 – Secretary/Administrator Sue McKenna
Memorandum of Association
For a copy of the Memorandum of Association click here.
For a copy of the Trust Deed click here.