Moving towards a better tomorrow for patients living with NF and their caregivers
It is with great pride and deep sense of purpose that we launch the first Health and Social Impact Assessment for Australians living with neurofibromatosis (NF).
In a historic step forward for NF advocacy and care, we officially launched the report at Parliament House on Tuesday 4 June, with representation from across the political spectrum. The release of this report comes just weeks after the Federal Government announced its intent to renew funding for frontline support services for an additional 12 months.
The Hon. Mark Butler MP (Minister for Health and Aged Care) addressed attendees and in a rare show of unity, he was joined by Shadow Minister for Health, Senator Anne Ruston MP. Government and opposition may disagree on many things, but we are very proud to say that support and recognition for Australians living with all types of NF is not one of them.
The event was attended by ministers , including Dr Mike Freelander MP (Labor member for Macarthur), the Hon Dr David Gillespie MP (Nationals member for Lyne); the Hon Ged Kearney MP (Assistant Health Minister); Rob Mitchell MP (Labor representative for McEwan); Gavin Pearce MP Liberal (Shadow Assistant Minister for Health); Tasmanian Senator Wendy Askew; Ms Rebekha Sharkie MP (South Australian Member for Mayo), as well as government advisors, members of the Department of Health, healthcare professionals, board members and NF community members.
We were joined by our partners at Alexion Astra Zeneca who provided grant funding for the assessment and even young NF Hero Emme, who charmed everyone she met, bravely sharing her experience alongside adults and parents.
You can watch the speeches from the Hon. Mark Butler and Senator Anne Ruston by clicking these links.
Watch Mark Butler MP address Watch Senator Anne Ruston Address
In addition to the event, we were fortunate to secure meetings with both the Hon. Mark Butler MP, Senator Anne Ruston MP, Ged Kearney MP and our local member, Sally Sitou MP. This afforded a number of our community to share their lived experience directly with those who are in a position to create meaningful change.
We would like to extend our sincerest gratitude to everyone who has contributed to this assessment, including the individuals and families who generously shared their experiences. Included within the report is a list of six key findings and recommendations which will serve as a roadmap to support continued advocacy efforts as we work towards policy reforms that enhance healthcare delivery, nationally.
Download the Report and Read download key findings and recommendations
We encourage you to read the report by clicking the links below and welcome your feedback and ongoing support.