Rare Disease Day 2026 – Celebrating the IDFNZ Achievement of 20 years of IDFA

Rare Disease Day was a special event this year, with our Australian sister organisation, IDFA, inviting current IDFNZ board members who were part of an original Trans-Tasman Board that set up IDFA 20 years ago.

It might seem strange that IDFA began in New Zealand. At that time, there were individual PID patients and a few small PID patient groups scattered across Australia, but, given the country's size and complexity, it had been challenging to establish a cohesive patient voice and support network for such a rare disease. Remembering this was long before tools such as the internet and social media were as advanced as they are now.

With PID patients regularly crossing the Tasman in both directions, IDFNZ sought a national patient group to support them in Australia. IDFNZ was well established in New Zealand by then, and we thought, why not set up a sister organisation in Australia ourselves?

This dream would not have been possible without the help and encouragement of Australian clinicians and patients who were also keen to have a National PID support organisation. Dr Sean Rimminton, Dr Jane Peake, Dr Karl Bleasel and Jo Smart were there from the beginning. Phillipa Kirkpatrick also played a key role. Australian patient representation was essential, and Michael Daniels, Ruth Taylor and David Bonavich were quick to join the project and help make it a reality. A TransTasman team was formed. IDFNZ provided start-up funding and staffing resources.

The ‘concept ‘of IDFA was ‘launched’ at the September 2005 ASCIA conference in Queenstown, and it was formally registered as a ‘company limited by guarantee’ and charity, on 15 December 2005. Patient support meetings were held in NSW, Victoria and Queensland over the following year, and in September 2006, IDFA held its Inaugural National Patient Conference in Sydney. This was exceptionally well attended, and we heard moving personal stories from patients: People reporting feelings of isolation, stigma, and the difficulties of struggling to cope with the daily burden of chronic disease, but also stories of courage and triumph despite adversity. The overall feeling was one of excitement and encouragement as people were, for the first time, introduced to others with similar experiences, and the conference was seen as a celebration of IDFA's formation and its potential to positively impact the lives of people affected by PID in the future.

That National Patient Conference began the journey to truly develop a collective voice. For the first time, the voices of those most affected by government policy were heard with IDFA submissions to the Federal government and the National Blood Authority on plasma and treatment matters. IDFA was also approved for membership of the International Patient Organisation for Primary Immunodeficiency (IPOPI), giving it an international foothold.

Janet Simons served as General Manager for IDFA, overseeing support services and events. Fundraising was also established, and community grants were obtained to ensure financial viability. David Hilliar and David Haye worked together to set up the accounting systems, liaising with the IRD and the Charity Commission to ensure compliance, and seeing IDFA through its first audits.

IDFA came about through skill, teamwork, and plain hard work. We also had a lot of fun along the way.

Since then, IDFA has grown and developed as a standalone organisation. And we are thrilled to report that, 20 years later, IDFA has grown in strength and reach across Australia. Providing much-needed support and services to PID patients. The Rare Disease Day conference was very well attended by patients from across Australia and has reinforced the impact IDFA is having on the Australian PID community.

We congratulate IDFA on its success and wish it all the best for the future.

The IDFNZ Board presented the IDFA Board with a small gift of a Māori carving, symbolising the bond between people of different cultures, fostering friendship between different tribes.

From the Kiwi PID Patient Community to our Australian friends, Happy Birthday!