A focused agenda for change - making a difference to those with coeliac disease

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Establishment of the Coeliac Research Fund (CRF) in July 2008 was an important first step in setting an agenda for change in order to make a real difference to the lives of the many thousands with coeliac disease.

The CRF’s mandate is unique in that it addresses three issues which are mutually dependent on each other for the successful transformation of the current landscape of coeliac disease. These issues are awareness, diagnosis and research.

The CRF acts as a conduit, bringing together the foremost experts in these fields to focus exclusively on what people with coeliac disease really want, i.e. new, practical outcomes which will improve the quality of their lives now while we work together to find an eventual cure.

Milestones

  • During its first year of operation, the CRF established firm credentials as an agent for change in the treatment of coeliac disease and it has laid a very strong foundation for further growth and development.
  • 2008-2009 began with the establishment of the organisation’s vision, mission goals and governance guidelines, together with a comprehensive Strategic Plan which provides a very clear road map for the journey ahead.
  • This was followed by the launch of the CRF visual identity and brand, including the logo which represents three villi , each symbolising the three core activity focuses of awareness, diagnosis and research.
  • Coelaic Awareness Week 2009 ‘Is your Mojo Missing? ‘was highly successful, achieving extensive media coverage around the country on a national, regional and suburban level.

CRF research grants

  • Is immune tolerance abnormal in coeliac disease?
  • The effect of plant enzyme supplementation on duodenal histology in coeliac patients maintaining a gluten free diet
  • An evaluation of cognitive changes in response to gluten challenge in patients with coeliac disease on a strict gluten free diet

Looking to the future

Much is to be done in 2010. During Coeliac Awareness Week we will be highlighting the need for better diagnosis of children with coeliac disease. We will also highlight the substantial health and economic burden caused by unrecognised coeliac disease. Education campaigns are planned to ensure that health professionals have access to the very best practise guidelines for coeliac disease. We will also reach out to industry and overseas organisations with a similar mission to the CRF. We will bring overseas experts to Australia to guide us in the next steps towards better awareness, diagnosis and research that will change the future for coeliac disease.