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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people with Rare Diseases
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types of Rare Diseases
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.