On 11 February 2025, I had the privilege of attending the Rare Disease Day Parliamentary Event at Parliament House, hosted by Rare Voices Australia (RVA) and the Parliamentary Friends of Rare Diseases. As the CEO of ITP Australia New Zealand (ITPANZ) and an Immune Thrombocytopenia (ITP) patient, this event held special significance for me – both professionally and personally.
The Rare Disease Summit, held every two years, is a critical event for the rare disease community.
On 25 July 2024, Aotearoa, New Zealand, witnessed a landmark event when it released its first Rare Disorders Strategy. You can get your copy of the strategy here.
The Rare Voices Australia 2024 Rare Disease Day Parliamentary Event in Canberra on the rarest day of the year (29 February). Hosted by the Parliamentary Friends of Rare Diseases, the event theme was Progress Beyond Policy.
For Rare Disease Day 2024, we travelled to New Zealand to advocate for the Immune Thrombocytopenia community. While there, we joined the Rare Disorders New Zealand Support Group breakfast.
From January 1, access to Thrombopoietin Receptor Agonists (TPORAs) became much easier for patients living with Immune Thrombocytopenia (ITP).
In November, Danielle travelled to Sydney to attend and participate in the 2022 National Rare Disease Summit organised by the national peak body for Rare Diseases, Rare Voices Australia.
From 1 January 2023, the maximum cost of general prescriptions under the PBS will fall for the first time in the 75-year history of the Pharmaceutical Benefits Scheme (PBS). It’s important that patients understand the changes and how they will affect them.
HAVE YOUR SAY: Submit your letter to us, and we will hand deliver them when we travel to Canberra on Monday 5th September 2022.
The PBAC recommends removing restrictions to make it easier for ALL ITP Patients to access TPORAs.