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Danny Hsu: From Clinical Trials to Patient Access in Rare Diseases
Jul 31, 2026, 23:17

Danny Hsu: From Clinical Trials to Patient Access in Rare Diseases

Danny Hsu, President of THANZ, Director of Therapeutic Apheresis, Immune and Obstetric Haematology at South Western Sydney Local Health District, shared a post on LinkedIn:

“What an incredible privilege it was to represent the dedicated clinicians managing rare diseases across our clinical trial units and hospital wards at yesterday’s event.

The launch of IQVIA’s critical new white paper, ‘All Too Rare,; presented brilliantly by Quentin Bracquart, highlighted the urgent need for change in how we evaluate and fund orphan therapies.

With Australia currently ranking 14th out of 15 comparator countries for funding rare disease medicines, and patients facing an average 22-month wait from registration to reimbursement, the call to action has never been clearer.

I was deeply humbled to share the stage with a panel of extraordinary leaders whose contributions to rare disease advocacy and healthcare policy are truly reshaping the landscape:

  • Timothy Fulton: From representing Australia in ice hockey to battling adult-onset Still’s Disease, Tim’s resilience is awe-inspiring. His incredible feat of running 100 kilometres in 200 days has done wonders to elevate the national profile of rare diseases.
  • Prof Andrew Wilson: As Chair of the Health Technology Assessment (HTA) Review Implementation Advisory Group, his leadership in guiding critical reforms and the rolling review of PBAC guidelines is paving the way for a more streamlined, equitable assessment of highly specialized therapies.
  • Ann Single: The CEO of the Patient Voice Initiative brings over 25 years of global expertise in ensuring patients are valued in health technology assessments. Navigating Fabry Disease personally, her commitment to embedding the patient voice into policy is unmatched.
  • Sarah McGoram: The President of the Patient Voice Initiative defied a terminal gastrointestinal stromal tumour (GIST) diagnosis to become a formidable advocate. Her relentless campaigning has successfully secured PBS access for life-extending treatments, addressing systemic inequities for rare cancer patients across the country.
  • Dr Gordon Reid: As the Federal Member for Robertson and a frontline Emergency Department physician, Dr Reid brings a vital, hands-on clinical perspective straight to Parliament. His firsthand understanding of the complexities our patients face is essential as we advocate for meaningful healthcare reform and equitable access

A massive thank you to our chairperson, Trent Zimmerman, for steering such a dynamic and essential conversation, and to Alexion General Manager Nicole Gaupset for her unwavering commitment to the rare disease community.

Together, from the consultation rooms to the policy tables, we can work to close the access gap for the two million Australians living with a rare disease.”Danny Hsu: From Clinical Trials to Patient Access in Rare Diseases

Find more posts featuring Danny Hsu on Hemostasis Today.

Andrew Wilson Ann Single Danny Hsu Gordon Reid Health Hematology Hemostasis Hemostasis News Hemostasis Today Medicine Nicole Gaupset Quentin Bracquart Timothy Fulton
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