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Rare Disease Day Partnerships

An annual day for awareness, connection and equity

What is Rare Disease Day

Rare Disease Day is a global movement held on the last day of February each year. It brings people living with rare disease, families, organisations, health professionals, researchers and supporters together to raise awareness and work towards greater equity in healthcare, diagnosis, treatment and social opportunities.

Across Australia, rare condition organisations mark the day in many different ways. Some hold their own events or activities, while others may not have the time, funding or people needed to organise something separately.

Learn more about Rare Disease Day →
“I support Rare Disease Day” poster for 28 February 2026, with the Rare Disease Day logo on a pink, purple and teal background. Learn more at rarediseaseday.org. #RareDiseaseDay.

Help shape our 2027 Rare Disease Day

We would like to hear from people living with rare, genetic or undiagnosed conditions; parents, carers and family members; rare condition organisations and condition networks; support group leaders; and others connected to the rare disease community.

You do not need to bring a fully developed idea or be ready to take on a role. Early questions, suggestions and honest feedback are welcome.

Register your interest
Illustration of four people, including a wheelchair user, gathered with a megaphone and speech bubble to represent community voices and advocacy.

Register your interest - Help us shape Rare Disease Day 2027

Tell us how you would like to be part of early planning for the 2027 Rare Disease Day Community Day. You do not need to have a fully formed idea, and most questions are optional.

Name
Which perspectives would you like to bring to the conversation? Select all that apply.
How would you like to be involved? Select all that apply.
You might tell us about connection, topics, activities, representation, support for community leaders or something you would not want the day to overlook.
You can tell us about timing, travel, online access, accessibility, caring responsibilities or anything else. Please share only what you are comfortable sharing
Consent to contact you

We’ll use your details to respond to your enquiry. Read our Privacy Policy.

What we are interested in learning

We want to understand:

  • what would make a community day worth the time and effort involved in taking part
  • whether people are looking for connection, practical information, shared learning, advocacy, celebration or something else
  • whether support group and rare condition organisation leaders would value dedicated time to meet, share practical experience and discuss common challenges
  • how individuals, organisations and different rare communities would like to be represented or involved
  • what could make it difficult to take part, including travel, timing, cost, health, caring responsibilities or access needs
  • what would help make the day welcoming, accessible and useful
  • what the day should not overlook.

The form below is a starting point. There will be opportunities for further conversation as planning develops.

Ways you could be involved

You might choose to:

  • join an early planning conversation
  • share your perspective or your community’s priorities
  • suggest a topic, activity or approach
  • explore contributing to part of the event
  • help your community or network hear about the day
  • receive updates while you decide whether you would like to be involved.

You can choose the level of involvement that is manageable for you. Registering your interest does not commit you or your organisation to attending, speaking, exhibiting, funding or delivering any part of the event.

 

Get in touch with us

Complete the short form below if you would like to be involved or stay informed as plans develop.

Individuals and organisations are
welcome. You do not need to be a GAA member, have paid staff or have the capacity to organise an activity of your own.

If a form is not the easiest way for you to respond, email info@geneticalliance.org.au.

Register your interest in Rare Disease Day 2027 →