IDFA’s Rare Disease Day 2025 campaign was a resounding success, raising awareness, fostering connections, and amplifying the voices of those living with primary immunodeficiencies (PI) and rare diseases. Through storytelling, social media engagement, and advocacy, the campaign reached thousands of people, helping to shine a light on the often-hidden struggles of rare disease communities.

The Power of Storytelling: “I Don’t Feel Alone” Video

One of the campaign’s standout moments was the “I Don’t Feel Alone” video, featuring 10 IDFA members sharing their personal experiences. This heartfelt video resonated with audiences, generating 3.1K views, with 78% of views coming from non-followers, helping IDFA reach new audiences. With 24 shares and high engagement, this initiative highlighted the importance of connection and support within the rare disease community.

Empowering Members: Campaign Heroes Initiative

Three dedicated members, Christopher, Arlo, and Austin took on the role of Campaign Heroes, each receiving a tailored pack with educational resources and a colouring competition entry. Their personal stories were developed into a media release, providing real-life perspectives on living with a rare disease. This initiative helped amplify their voices and inspire others facing similar challenges.

Media Coverage

Forbes Advocate – Local young warrior sparks awareness for Rare Disease Day
Morton Daily – “Austin’s resilience inspires us every day.”

Resource Distribution and Colouring Competition

During the campaign, members volunteers to Distribute IDFA Resources to healthcare professionals across the country with 15 packs sent out.

The colouring competition prize in 2025 was a family pass to their nearest Zoo. For this, IDFA received 157 entries, and were grateful for the talented young individuals who shared their colouring expertise.

Strengthening Advocacy and Partnerships

• IDFA became a ‘Friend’ of Rare Disease Day and joined the Sunflower Hidden Disability initiative, strengthening its advocacy efforts.
• IDFA participated in Rare Voices Australia’s parliamentary event, using the opportunity to raise awareness at a national level.
• Government outreach was a key focus, with campaign materials shared with MPs to increase awareness and advocate for better support for people with rare diseases.
• Many of IDFA’s partner organisations such as Rare Voices Australia, shared the content developed to amplify the campaign.

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.

This initiative not only recognised the students’ participation but also served as a meaningful opportunity to raise awareness about immunodeficiencies within the school community. Moving forward, IDFA will explore expanding this aspect of the campaign, with a stronger focus on school engagement in future awareness initiatives.

Looking Ahead to Rare Disease Day 2026

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.

Together, we can continue to raise awareness and ensure that no one living with a rare disease feels alone.