Help improve the lives of patients living with Von Hippel-Lindau (VHL) in Australia.
Submissions close 29th of May, 2024. Share your VHL story today.
- Are you a VHL patient, a healthcare professional, or a carer of someone living with VHL?
- Are you a member of the general public who has seen how VHL impacts quality of life?
- Are you happy to share your story and how VHL has impacted your lived experiences?
If you answered yes to ANY of the above questions, we need your help.
The Pharmaceuticals Benefits Advisory Committee (PBAC) is set to consider the potential listing of Belzutifan at their upcoming meeting in July 2024. Your input as a VHL patient, carer, a member of the general public, or HCP is invaluable in this decision-making process.
The PBAC will assess clinical evidence but also welcomes supporting submissions from doctors, healthcare professionals, patients, and carers. Your voice can profoundly influence decision-makers, shedding light on the real impact of innovative treatments for VHL patients. Consumer comments matter – and we need yours.
How can you help?
Submit your personal story via the instructions below.
Patient and carer input, in the form of short personal narratives, can greatly aid the PBAC in understanding the lived experiences of those affected by VHL. Your stories are instrumental in shaping the PBAC’s decision-making process.
Submission Deadline.
The closing date for patient comments is 29th May 2024 and submissions can be made as follows:
Invite your local MP to the VHL Parliament Event.
NECA is organising a special VHL event at Parliament House in Canberra, with the support of MSD. This event, scheduled for Thursday, 4th July from 10 am to 12 midday, aims to raise awareness and garner support for the VHL cause. All MPs and Senators will receive invitations, and your participation is key. We encourage you to reach out to your local MP and request their attendance.
Your participation and advocacy are pivotal in ensuring access to life-changing treatments for VHL patients. Together, let’s make our voices heard and pave the way for a brighter future.
Need more information?
The Patient Voice Initiative has a range of practical resources including:
- Short guides for health consumers and their loved ones who are interested in making a consumer comment
- A tip sheet by an experienced patient advocate can be downloaded and shared.
International Nurses Day 
