The theme for Rare Disease Day 2026, which took place on Saturday 28 February, was “More Than You Can Imagine”. This theme was at once a collective call-to-action and a powerful reminder: while rare diseases may be uncommon from individual to individual, collectively they impact millions of people worldwide. Accordingly, this year’s event highlighted the global impact of rare diseases, and the urgent need for equitable healthcare, research, and social inclusion.
These are themes that align closely with the mission, vision and objectives of PaLaDIn. The project is creating a cutting-edge data platform, called the Interactium®, to enable patients to make more informed decisions about their care and to participate in relevant research opportunities. To ensure this platform is accessible and useful for patients, it is being co-designed with a group of patients and caregivers, collectively known as the Patient and Caregiver User Group (PCUG), who are living with a rare neuromuscular disease.
The PCUG are already providing valuable insights into the platform objectives, accessibility, features, and design. With their lived experience and expertise, the group remind us to design and develop with the inclusion of all patients in mind, and to be mindful of digital literacy, for example. The insights and input of our PCUG members will ultimately result in a more inclusive experience for Interactium® users.
Once the Interactium® is built and tested in rare neuromuscular diseases, PaLaDIn will develop a series of toolkits to share its learning with the wider rare disease community, supporting them in their mission towards equity in social opportunities, healthcare, and access to diagnosis and treatments for people living with a rare disease.
To find out more about the PCUG, see here. For more information about Rare Disease Day and how you can get involved, see here.
