About DEBRA Australia

DEBRA Australia is a not for profit organisation that does not receive any direct Government funding and works tirelessly to support those living with a group of rare skin blistering diseases called Epidermolysis Bullosa (EB). DEBRA Australia assists in improving the lives of children and adults living with EB, a debilitating and sometimes fatal condition, by providing necessary support services, medical supplies, aids and equipment, assistance with transition to independent living and research focusing on different aspects of EB.

Vision

A world where no one suffers from the painful genetic skin condition Epidermolysis Bullosa (EB).

Mission

To ensure that all people living with EB have access to the best quality support and medical care, whilst also driving the effective development of treatments and a cure for EB. To raise awareness and understanding of EB amongst health professionals and the general public within Australia.

Purpose

To enable a sense of dignity, meaning and belonging and reduce suffering for all Australians living with EB.

Primary Objectives of the Organisation

(*All points of equal importance)

  • To ensure continued access to specialised EB care across Australia
  • To support EB families in improving their quality of life
  • To encourage research which develops innovative treatments towards a final cure for EB
  • To promote awareness and understanding of EB
  • To become financially sustainable

DEBRA Australia Values

  1. Focused: DEBRA is an individual and family-focused, EB service organisation
  2. Compassionate: DEBRA supports EB families with compassion, respect and empathy
  3. Ethical: DEBRA is a professional, responsible, honest and ethical organisation
  4. Accountable: DEBRA is accountable to its members and to the wider community
  5. Collaborative: DEBRA builds partnerships and networks to collaborate with internal and external stakeholders as well as the wider community
  6. Impactful: DEBRA seeks to achieve positive impacts on behalf of the EB community.

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.

Research Programs

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.

Contact Info

DEBRA Australia ABN: 727 045 155 71
DEBRA Australia Ltd ACN: 157 774 546 (as trustee)
Address: PO Box 226, Pittsworth QLD 4356
Email: admin@debra.org.au
Board Chair: privacy@debra.org.au
Privacy Officer: chair@debra.org.au
Phone: +61 427 937 003 – Secretary/Administrator Sue McKenna