Rare Disease Disability Project News: September 2026

Below are the updates for the Rare Disease Disability Project for September 2026.

Stakeholder Reference Group

In September, some Stakeholder Reference Group (SRG) members shared their Most Significant Change stories and helped evaluate Rare Disease Disability Toolkit resources developed through the RVA Partner Projects.

Virtual Kitchen Table Peer Support Sessions

In September, RVA facilitated the final Virtual Kitchen Table Peer Support Sessions. Thank you to everyone who took part in these sessions. Together, you created supportive spaces where people living with rare disease disability and caregivers could connect, share experiences, and learn from others who understand the unique challenges of living with rare disease disability.

A special thank you to RVA Partner, Genetic Alliance Australia, for partnering with RVA to deliver the final sessions.

One of the strongest messages from the sessions was the importance of peer support. Connecting with others who share similar experiences can reduce isolation, provide practical advice, and foster a sense of belonging.

You can visit the Finding Helpful Peer and Community Supports webpage on the RARE Portal for practical guidance on finding peer support and community connections. The RARE Help webpage includes the most common questions RVA receives from people living with a rare disease.

Rare Disease Disability Network

The final virtual Rare Disease Disability Network (RDDN) meeting is scheduled for 14 October, ahead of the face-to-face Showcase in November. Members will receive updates on the Rare Disease Disability Toolkit and RVA Partner Project resources, reflect on the important role of the RDDN in strengthening outcomes for people living with rare disease disability, and explore opportunities for ongoing collaboration, shared learning, and future impact.

Learn more about the RDDN at RVA’s website.

If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network. Email RVA to join: [email protected]