Partnership With DEBRA Australia

We are proud to use our platform to help raise awareness, compassion and support for this cause.

Together, we can bring comfort, joy and hope where it’s needed most.

Thank you for supporting Soft Love Australia. Your kindness brings us all closer to a world where no one has to suffer from Epidermolysis Bullosa.

What is EB

Epidermolysis Bullosa (EB) is a rare genetic condition whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns. 

It is very painful, and a dressing change is required daily to protect and medicate wounds.
EB is characterised by skin fragility with blister formation occurring spontaneously or following minor trauma.
It is estimated that there are approximately 1,000 people in Australia who have some form of EB and over 500,000 worldwide. It occurs in all racial and ethnic groups and affects males and females equally.
EB may not always be evident at birth. Milder cases of EB may become apparent when a child crawls, walks, runs or when young adults become more physically active.

Who is DEBRA Australia

DEBRA Australia is a non-government funded not-for-profit organisation which supports, represents and promotes the interests of Australians living with the painful and rare genetic skin blistering condition, Epidermolysis Bullosa (EB).

Vision                                                                                                             

A world where no one suffers from the painful genetic skin condition, EB.

Mission                                                                                                         

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.

EB Programs & Services

Hospital Nurse Program

EB Nurses are a vital point of contact for individuals living with EB and especially for those families with a new EB baby. To provide a national nursing service to EB individuals and families, EB Nurses are required to act in the capacity of rapid response nurses, especially when new babies are born. Transitional services are also available for EB patients moving
from the paediatric clinical services to adulthood by providing an environment whereby young adults can work towards independent living.

In Home Nursing

DEBRA Australia offers all EB families in home nursing care to assist with bathing, wound care and dressings. This care improves quality of life for individuals and families, develops independence for young adults while providing best care and wound management. 

When NDIS funding is not available, this program is especially useful for families with newborns who are learning to cope with living with EB and young adults who are trying to establish more independence.

Podiatry Program

EB Podiatry services, with an EB specialist Podiatrist are available for all EB individuals across NSW, Vic and Qld. This will allow access for much needed foot support for our EB community.

Counselling Program

Experiencing a diagnosis of EB can be very distressing and many will benefit from professional support to help manage the challenges living with EB presents in everyday life. Families are offered access to confidential counselling and psychological
interventions with psychologists who have experience and training in EB and its impact on individuals and families.

Family Support Program                                                                                                    

Our Family Support team works closely with families to streamline and support care across hospitals and community settings, ensuring they have access to all relevant services provided by government agencies and health service providers. DEBRA Australia also helps close the gap on any other support that is needed by families.

National EB Conference & Camp

This event is held every two to three years with the focus on informing families of the latest research updates and best EB care techniques and products. A children’s camp is also included to ensure they have loads of fun while the parents attend various sessions and get some much-needed respite and networking time.

Research & Education

DEBRA Australia supports clinical and laboratory- based research opportunities in Australia to improve EB services and ultimately find a cure. We also support travel grants for health professionals and researchers.
An annual event is held to educate health professionals on the latest research and best practice clinical guidelines. 

Help us raise awareness of EB and our life changing programs by talking to your friends, family and work colleagues.