Family Support Application

Through the Family Support Program, DEBRA Australia has approved in excess of 700 applications each year to support individuals/families on a national basis. People living with EB (or their representatives) can apply for support via the EB Family Support Program* by completing this online form. Each application is reviewed by the Family Support Coordinator and the Family Support Committee on an individual basis with consideration given to the needs of the individual or family and the budget available to fund the request. DEBRA Australia is a not-for-profit organisation which relies on the generosity of donors. As a result, not all applications can be approved if budget constraints apply.  Family Support Programs aim to support the individuals living with EB by funding items and services which directly impact their quality of life. These include:

  • Medical Supplies
  • Aids & Equipment
  • Quality of life
  • Support Services
  • Transition to Independent Living
  • Parent and Sibling Respite
  • Counselling Services

*In some cases, it may be appropriate for applications to be made to other agencies and support organisations including NDIS, The Salvos or St Vincent de Paul Society.

Complete the online application form

To request a physical application form contact ebfamilysupport@debra.org.au.

For more information contact Simone Baird on 0413 967 609 or Sue McKenna on 0427 937 003.

Future Family Planning

DEBRA Australia’s vision is to have a world where no one suffers from the painful genetic skin condition Epidermolysis Bullosa (EB) and our mission is 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.

DEBRA Australia is committed to supporting families with professional and appropriate health pathways for the formal diagnosis of EB and future family planning. We aim to offer access to genetic testing and IVF treatment to prevent future EB pregnancies for families who wish to access this support.

Individuals and families requiring advice about linking into this service or would like to receive more information on available resources, please contact our National Family Support Coordinator, Simone Baird at simone.baird@debra.org.au 0413 967 609 or your relevant EB nurse.

Tara’s story

A big thank you to the DEBRA Foundation, Kate Turner Fund and the Family Support Committee for helping me get a brand spanking new mobility scooter.  My second-hand one was on the fritz and I had no hope of getting a replacement without a little help. Well, you guys gave me a LOT of help.

That scooter—I’ve named her Silver by the way—means freedom to me. I can get out the house, every single day if I want, and I don’t have to worry about hurting my feet. I don’t have a car so the scooter is how I run errands and do my shopping. But it’s so much more than a practical object, it’s become a part of my identity too—it’s how I connect with nature and community. Without it I’d be shut-in. Nothing makes me happier than getting out in the sunshine and fresh air to see what’s happening in the neighbourhood and see who’s about, and smell the flowers in bloom and the freshly cut grass, and smile at every stranger I see—heaven.

I’ve spent precious years seeing doctors and specialists and being on wait lists and filling in forms and gathering documents and speaking with legal aids and psychologists and politicians—exhausting. All done to access that precious government aid, such as the dressings scheme. It was a surprise, after all that, to receive such fast, generous and compassionate assistance from you all. Thank you so much.