RVA is seeking expressions of interest (EOI) from Rare Disease Disability Network (RDDN) and Stakeholder Reference Group (SRG) members interested in sharing their most significant change stories in rare disease disability.

Your participation will help RVA to better understand the impact of the Rare Disease Disability Project (the Project).

The stories shared will highlight:

  • What is working well.
  • Where challenges remain.
  • What changes are having the greatest impact.

RVA uses a modified version of the most significant change methodology as a measurement tool to help understand impact across the rare disease sector.

RVA is seeking EOIs from:

  • Up to three (3) RDDN members, and
  • Up to three (3) SRG members.

Stories can be shared in writing or via a 30-minute virtual interview. Please submit your EOI by Monday, 6 July 2026.

If you have a story of most significant change you are happy to share, please complete the form below.

Please contact RVA’s Research and Evaluation Manager, Dr Falak Helwani, if you have any questions: falak.helwani@rarevoices.org.au

Story Collection Participant Information and Consent Form

Name(Required)
Stakeholder group (please select all that apply):(Required)
Consent
Please contact RVA Research and Evaluation Manager at falak.helwani@rarevoices.org.au if you have any questions.