Monthly community newsletter

Community Updates News from across the rare disease community

Catch up on Rare Diseases NSW news, research, resources, events and opportunities to participate.

Our monthly Community Update brings together developments from Rare Diseases NSW and the wider rare and undiagnosed disease community.

Each issue is designed for people living with rare conditions, families and support people, healthcare professionals, researchers, students, advocates, policy makers and community partners.

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Latest issue

Care. Connect. Cure.

Community Update September 2026

Members of the GeneEQUAL Inclusive Research Team standing together at Rare Disease Day 2025
Members of the GeneEQUAL Inclusive Research Team at Rare Disease Day 2025. Photo credit: Rick Guidotti .

This issue brings together new rare disease research, resources, events and opportunities to connect across New South Wales and beyond.

In this issue

  • Tow Research Awards 2026
  • New spinal muscular atrophy guidance
  • Rare Condition Passports and Toolkit
  • Research, resources and upcoming events
Read September 2026

The full issue opens on the Mailchimp newsletter archive.

Past community updates

Explore previous issues

Browse earlier Rare Diseases NSW Community Updates for research news, practical resources, community stories, events and opportunities to participate.

Community Update

Care. Connect. Cure.

Rare Diseases NSW

A milestone decade for spinal muscular atrophy, progress toward Rare Disease Centres of Expertise in Australia, and a broad round-up of research, resources and events.

Issue highlights

  • Ten years of progress in spinal muscular atrophy
  • Rare Disease Centres of Expertise forums
  • Research, resources, events and ways to participate
Read August 2026

Opens in the Mailchimp newsletter archive.

Community Update

Care. Connect. Cure.

Rare Diseases NSW

New research, RarePower co-design, health-literacy projects, education opportunities, podcasts, resources and upcoming rare disease events.

Issue highlights

  • New research and participation opportunities
  • RarePower co-design and health-literacy projects
  • Education, podcasts, resources and events
Read July 2026

Opens in the Mailchimp newsletter archive.

Community Update

Care. Connect. Cure.

Rare Diseases NSW

Grant activity, research recruitment and a rare disease story reaching the screen at the Sydney Film Festival, alongside community news and opportunities.

Issue highlights

  • Rare disease grant activity and partnerships
  • SIBS-ONLINE research recruitment
  • You Look Fine at the Sydney Film Festival
Read June 2026

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