IDFA is celebrating Rare Disease Day
28th February 2025
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Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years) – the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
people with Rare Diseases
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of Rare Diseases are genetic
types of Rare Diseases
Ways to get involved with Rare Disease Day
In 2025, we aim to highlight rare diseases, specifically immunodeficiency, to the Australian public in a way that provides a positive entry to a conversation about immunodeficiency.
Find out more about the ways you get can get involved below:
Be a Campaign Hero!
In 2025, we’re inviting primary school children living with immunodeficiency to step into the spotlight as our ‘Campaign Heroes.’
As a Campaign Hero, your child will have the opportunity to share their story and raise awareness about their rare disease with classmates, teachers, and family.
Each hero will receive a special pack, including:
– A personalised letter on “How to Be a Hero”
– Entries for our colouring competition
– A teaching resource to help educate their school community
If you or your child would like to take part, click the link below to get involved. Let’s celebrate our heroes together!
Win a Trip to the Zoo
We’re giving away one family pass to the Zoo in your closest capital city.
For your chance to win, download and print-out our 2025 Rare Disease Day colouring in competition for your children or students to complete.
Once they’ve finished their masterpiece, send it back to us (instructions provided in download) by the 28th of Februray 2025.
Winners will be announced on the 6 March 2025.
Create a Lesson Plan
If you are a teacher or parent of school-aged children, we encourage you to incorporate or encourage your school to incorporate this lesson plan on explaining living with a rare disease to young children.
Download the template plans, adapt them as needed and start your lesson.
Join Us in Creating an Inspiring Rare Disease Day Video!
Help us bring our motto, “I Don’t Feel Alone,” to life through a heartfelt video that showcases the strength and diversity of our community.
We’re inviting members to contribute by recording a short 3-5 second video on their phone, simply saying “I Don’t Feel Alone.”
By participating, you’ll help raise awareness for immunodeficiencies and show others the power of connection.
Follow the link below to join in and complete the form with instructions. Together, let’s make an impact!
Join the Conversation - Distribute Resources
Getting IDFA resources into healthcare settings that are frequented by patients with immunodeficiencies is an important component of awareness-raising and community-building for IDFA members.
Join us in ensuring those on their diagnosis journey discover IDFA and feel embraced by this incredible community.
Attend our Rare Disease Day Webinar
In partnership with AusPIPS Inc.
This webinar