Inaugural Queensland Parliamentary Event

RVA News

Rare Voices Australia (RVA) invites Queensland-based leaders of RVA Partner groups/organisations to the first-ever Queensland Parliamentary Event dedicated to people living with a rare disease.

This invite-only, drop-in event gives RVA Partner group/organisation leaders the opportunity to interact directly with parliamentarians who stop by over a one-hour period to meet RVA and others who represent people living with a rare disease. There will be no formal speeches to maximise engagement between parliamentarians and attendees.

Event details

Date: Tuesday, 14 November 2023

Time: 1pm to 2pm (AEST)

Location: Parliament House, Queensland

RSVP: Via this form by 5pm (AEST) Tuesday, 7 November 2023

Purpose of the event

This Parliamentary Event is intended to be an initial step towards the establishment of a Queensland Parliamentary Friends of People Living with a Rare Disease. The event will provide elected representatives with the opportunity to gain a better understanding of the common challenges experienced by people living with a rare disease and to meet Queensland-based rare disease group/organisation leaders.

RVA’s strategic aims as the national peak body for Australians living with a rare disease

  • Establish a Queensland Parliamentary Friends of People Living with a Rare Disease
  • Work with parliamentarians to develop an implementation plan for progressing relevant aspects of the Australian Government’s National Strategic Action Plan for Rare Diseases
  • Identify the relevant division within Queensland’s Department of Health responsible for progressing a strategic approach to rare diseases

Maximising your attendance at the event

RVA Partner group/organisation leaders are invited to support the strategic aims of this event and bring information about their own group/organisation to share with parliamentarians. RVA recommends making information available via QR code(s). There will not be any capacity for organisations to bring banners and other display materials.

Invite your local Queensland Member of Parliament

This event is a great opportunity to meet and speak with politicians in Queensland to further highlight rare diseases. Don’t forget to invite your State Member of Parliament if you are attending. If you don’t know who your State Member of Parliament is, visit Queensland Parliament’s official website and the find your electorate page.

Template letter for inviting your local Member of Parliament [Word document]


This invitation is for RVA Partner group/organisation leaders only and RVA is unable to provide any travel support for this event. If you would like to nominate someone in your group/organisation to attend the event besides the person who received the formal invitation RVA has distributed, please email [email protected] with the person’s name, email address and their title. RVA will respond to your request as soon as possible.