Self-Care for Rare

Self Care for Rare is our annual wellbeing campaign, held each July to coincide with Chronic Disease Awareness Day and the International Day of Self-Care. The campaign is dedicated to exploring practical ways to support physical and emotional wellbeing while living with AKU, bringing together expert advice, lived experience and community support.

Self-care looks different for everyone. Whether it’s staying active, managing pain, looking after your mental wellbeing or connecting with others, finding what works for you is an important part of living with AKU.

Since launching Self Care for Rare in 2025, we’ve created a growing collection of talks, blogs and practical resources to support the AKU community. Explore the resources below for expert guidance, lived experience and practical ideas to support your own self-care journey.

In 2026, Self Care for Rare expanded into a virtual day of learning, bringing together specialists from the National Alkaptonuria Centre (NAC), guest speakers and members of the AKU community. Through expert presentations, lived experience and interactive community discussions, the event explored practical strategies for supporting both physical and emotional wellbeing.

Self Care for Rare 2025 marked the launch of our self-care campaign, exploring what self-care really means when you’re living with AKU. Through live sessions, blogs and practical resources, we covered topics including aquatic exercise, Pilates, recovery after surgery, emotional wellbeing and resilience. The campaign brought together expert advice, lived experience and patient stories, with contributions from mental health charity Rareminds,