Each year, Rare Disease Day serves as a reminder that while each rare condition may affect only a small number of people, the rare disease community is anything but small. The World Health Organisation estimates there are 10,000 rare diseases globally and around 300 million people living with a rare disease. The challenge to reach and support rare disease patients and their families remains vast.
With an ever-growing need for better disease awareness, diagnosis and treatment pathway support, the need to globally connect people affected by rare disease has never been greater.
This year’s Rare Disease Day theme, “Share Your Colours,” feels especially meaningful to Kanga. From years of working across rare and complex diseases, we’ve seen that rare diseases are multicoloured and multifaceted, affecting many people from all walks of life and locations.
It takes an army of people with resilience, advocacy, and passion for change to support and get treatment to those with a rare disease, often with much smaller budgets than mainstream treatments.
The knowledge that rare disease patients and carers are often the true experts has been a basis for many of Kanga’s rare disease projects. Patients, carers and supporters who are digitally active and deeply engaged, but too often are not listened to or truly heard.
As we and many of those who form part of the rare disease community can attest, living with a rare disease can be profoundly lonely. Patients and carers often struggle to find others who truly understand what they’re going through, and yet connecting people with rare diseases is one of the most powerful forms of support.
In our workshops and co-creation sessions, we’ve repeatedly heard how life-changing it can be to speak with people in the same position for the first time. For many families, the journey begins with an agonising wait for a diagnosis or the constant push to be heard and diagnosed, with many waiting 4.7 years, according to Eurordis 2024, depending on various factors such as location and demographics.
The symptoms may be common, but the unique combination of those symptoms often holds the key to identifying a rare condition. That’s why capturing the full patient journey, pre-diagnosis, diagnosis, and beyond, is critical to designing meaningful support and improving outcomes.
Kanga believes in rich, insight-led approaches and interventions, connecting and building patient-led, co-created communities that capture the real-world needs, challenges and gaps in support and treatment. Interventions such as online co-creation sessions that are designed not just for people living with rare diseases, but with them. These sessions provide emotional support, practical tools, shared experiences, and a sense of belonging.
At Kanga, co-creation and listening to patients are not buzzwords or add-ons. They are must-have, practical methods that get to the root of the patient need. We use approaches such as interviews to map journeys, persona development to bring real lived experience into the process, and workshops that ensure patient insights remain the “red thread” running through every output.
The results speak for themselves. From initiatives like Acromunity, co-created with acromegaly patients and HCPs, to Living With NETs, developed with patients from inception to launch, we’ve seen how involving patients early leads to better content, stronger engagement, and more meaningful support. This Rare Disease Day, we’re proud to share our colours. The hands-on experience, insights, and lessons gained from years of partnering with rare disease patients, HCPs and specialists, PAGs and wider communities. And we’ll keep doing what we believe matters most: listening deeply, collaborating openly, and building support that helps people feel connected, empowered, and seen.
