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10.09.2013

A focus on DEBRA Australia

As part of a new series of interviews, DEBRA International will be catching up with our international partners and letting you, the reader, gain invaluable insight into how their organisations work. Our first interview is with Michael Fitzpatrick of DEBRA Australia.

How and why was your organisation established?

DEBRA Australia as a national group was officially registered in 2005. It was a way to improve networking and sharing of information between the four DEBRA State groups that had been operating successfully for a number of years in Australia. This ...

  • allowed us to share fundraising and awareness ideas locally and internationally.
  • was a catalyst to lobby government for improved services for people living with EB.
  • was an opportunity to coordinate future networking and conferences for families.

What big wins has your organisation had in recent years?

After years of lobbying by families, state branches and with the support of DEBRA Australia, medical professionals, industry and politicians the first National Epidermolysis Dressing Scheme for people living with EB commenced in January 2010. This provided the first fair and equitable access to top of the line dressings for all eligible people with EB in Australia. DEBRA Australia is a named stakeholder in this program.

For years DEBRA groups at all levels, along with other organisations where spending many thousands of dollars funding and supplying dressings to families who could not afford the added cost.

DEBRA Australia now funds two nurses based in the hospital system that can support families and professionals. This along with the in home nursing support program that is slowly being rolled out across the country, funded by a partner organisation Little Heroes, is improving quality of life outcomes.

What challenges has your organisation met in the past and how did overcome them?

Due to Australia's geographical location and relatively small population, our initial challenges included distance and funding. It is extremely expensive to operate a non for profit group here. It is also a long way from most other countries.

  • Improved technology has allowed us to have meetings using phone, social media and email to work on projects.
  • Having families from diverse professional backgrounds across the country allowed us to tap into skills, share ideas, and grow funding and awareness.
  • Regulatory compliance is challenging as we have multiple levels of government, none of which have the same process for registering or providing information. It was imperative that we had a dedicated resource with one paid employee for a number of years along with a willing committee to share the work load as volunteers.
  • Without our dedicated families and volunteers we would not have continued to grow. We actively sought out professionals with the skills to help us and now many of these people are part of the DEBRA Australia family and have taken up roles.
  • Operating DEBRA Australia as a non for profit business, as we have to compete for funding, support and awareness with many other organisations. Being rare and having small numbers makes it challenging to break through but some organisations and individuals are looking for these challenges to support.
  • We now have the ability to support quality research and professionals locally, developing knowledge and skills within the medical and research profession. This leads to improved support and awareness with improved outcomes for people living with EB.

In July 2013 we took another great step forward with DEBRA Australia changing its structure. We now have two paid employees and contract out some work as needed. This has allowed the four State groups that started many years ago to become one truly united group with one voice in Australia.

Some of the State groups have now moved their assets to DEBRA Australia to be managed, meeting compliance and regulatory requirements. The people in the State groups for many years were the silent back room workers getting the job done. Now these people can concentrate on supporting families locally which they do a wonderful job at and which we will continue supporting them with.

Do you have any advice you could give to newer DEBRA organisations?

Every group faces many challenges in their respective country. We must be mindful of this and resist the urge to have a perception about another group or country. It takes hard work locally to achieve outcomes, surround your group with a diverse range of skilled knowledgeable people. Engage with families for their views, network, reach out and ask specific questions of other groups. Modify other initiatives to meet the local environment. Above all work collaboratively.

What are your hopes for the future of your organisation? 

To continue to work as a team, passionate about what we do and how we do it. Ensuring that our organisation stays true to our vision and mission. 

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

Mission We support the provision of specialist care. We give support to improve quality of life for all those living with EB. We are committed to supporting research which develops innovative treatments and will one day find a cure.

Michael Fitzpatrick, DEBRA Australia, interviewed by Sinead Deasy, DEBRA Ireland

Board of DEBRA Australia - group picture

DEBRA Australia board members