Our Research Strategy

As a rare condition, attracting research funding from larger funding bodies can be a challenge. Our program aims to ensure that this devastating disease receives the research attention it requires and deserves.


Our Approach

  • Aims to maximise the impact of the funds we invest by identifying the research that has the potential to deliver the greatest impact for our families.

  • Defines three focus areas: halt disease progression, repair damage and improve quality of life. We believe that investment in these areas is essential to bring desperately needed treatments to market.

  • Applications for research grants are assessed via a robust review process to ensure we fund the most promising research.

We plan to invest between AUD$500,000-$700,000 in our research program annually across three grant types:

  1. Translational research grants
  2. Incubator grants
  3. Scholarships and fellowships

You can view and download a PDF of our Research Strategy below.

Download PDF

Research Focus Areas 

Our Research Strategy focuses on three priority areas, and our Research Funding Program will consider projects that address the following areas:

Note: future funding focus areas may include: prevention (including pre-conception), diagnosis and prognosis research.

Research Principles

The following principles underpin our Research Strategy and apply to each focus area: