IDFA Supports Rare Disease Day
28th February
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, it 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, and provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
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Ways to get involved with Rare Disease Day
In 2026, 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:
Become a National School Ambassador
In 2026, we’re inviting children across Australia to step into this exciting ambassador role and become leaders for change.
What does a School Ambassador do?
Your child will partner with IDFA to raise awareness and strengthen school-wide understanding of immunodeficiencies. And don’t worry — we’ve made it easy! Ambassadors can choose from a range of fun, ready-to-use activities and resources, including:
- Colouring competition – with the chance to win a trip to the zoo!
- Curriculum-aligned teaching resource for classrooms
- Fundraising and communications kit to support school activities and events
As an ambassador, your child can proudly share their story, help classmates and teachers understand their rare condition, and inspire others by showing what strength and resilience really look like.
Enter your details below to join the program in 2026.
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.
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 2026 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 6 March 2026.
Winners will be announced on the 10 March 2026.
Rare Disease Day 2026: A Ready-Made Awareness Kit for Schools
IDFA has developed a Communications and Fundraising Kit designed especially for schools. Packed with ready-to-use resources—including newsletter articles, social media copy and imagery, education app content, and more—the kit makes it simple to spark conversations and support students living with rare diseases.
Download the templates, share them with your school community, and join thousands of Australians in shining a light on rare conditions.
Download Teaching Resource
If you’re a teacher or a parent of school-aged children, we encourage you to use or share with your school this teaching resource designed to help young students understand what it means to live with a rare disease.
Simply download the template, adapt it to suit your class, and begin your lesson.
2025 Campaign Highlights
Digital Campaign and Storytelling
IDFA’s Rare Disease Day 2025 campaign was a resounding success, shining a light on the hidden struggles of people living with primary immunodeficiencies (PI) and rare diseases.
At the heart of the campaign was the powerful “I Don’t Feel Alone” video, featuring 10 IDFA members sharing their lived experiences. This heartfelt video reached 3.1K views, with 78% of views from non-followers, showing strong engagement and growth in audience reach. With 24 shares and emotional resonance, the video showcased the power of personal storytelling to build connection and understanding.
The Campaign Heroes Initiative further elevated member voices. Christopher, Arlo, and Austin received tailored Campaign Hero packs with educational resources and a colouring competition entry. Their stories were turned into a media release to provide real-life insight into life with a rare disease, inspiring and empowering others in the community.
Email Communications
IDFA kept its member base informed and engaged throughout the campaign via targeted email updates. These emails shared resources, encouraged participation in the colouring competition, highlighted the campaign heroes, and celebrated media milestones. Emails also promoted the “I Don’t Feel Alone” video, helping drive views and shares from IDFA’s core community.
Media and Partnerships
The campaign gained strong media traction with stories featured in:
Forbes Advocate – “Local young warrior sparks awareness for Rare Disease Day”
Morton Daily – “Austin’s resilience inspires us every day”
IDFA deepened partnerships with several organisations:
Became a ‘Friend’ of Rare Disease Day
Joined the Sunflower Hidden Disability initiative
Participated in Rare Voices Australia’s parliamentary event to raise national-level awareness
Shared campaign materials with MPs to drive government engagement
Partner organisations, including Rare Voices Australia, helped amplify campaign messages through their own platforms
Social Media and Outreach
Across Facebook, Instagram, and LinkedIn, IDFA shared over 100 posts and stories. We received 61 shares, 198 interactions, and strong engagement from non-followers, particularly with video and story content. Social media played a key role in driving awareness and participation.
Creating Awareness in Schools
IDFA successfully engaged with Forbes Public School, which submitted over 100 entries into the competition. Given this strong participation, it was no surprise that the winner was from the school. As part of IDFA’s ongoing awareness efforts, a school visit was organised to present the award and highlight Rare Diseases, with a specific focus on immunodeficiencies.
During the visit, IDFA CEO Carolyn Dews and IDFA Carer Member Emma Baxter (mother of Jack) delivered a presentation, which included a segment from Operation Ouch (Season 13, Episode 1: Fart Rocket, 9:00–12:30 minutes), where Jack was featured. The winner was also presented with a family zoo voucher, generously provided by Taronga Zoo.
Webinar
IDFA co-hosted a webinar with AusPIPS Inc., attracting 92 registrations. The event benefited from strong collaboration and shared expertise, offering valuable education and engagement. Watch here
The Rare Disease Day 2025 campaign made a lasting impact by fostering community connections, raising awareness, and strengthening advocacy efforts. IDFA is committed to building on these successes by improving resource distribution, enhancing media engagement, and further expanding outreach efforts.