Our people
We are a patient-led charity, powered by dedicated trustees, staff and volunteers who are passionate about improving the lives of people living with Alport.
Our mission
We work in service of the Alport community in 5 key ways.
We bring people together so no one faces Alport alone.
Through information days and online communities, we connect families and patients at every stage.
We support people living with Alport, provide financial help to access events, and run programmes that build confidence and connection.
We provide clear and trusted information so people can better understand Alport and make informed decisions.
Through videos, workshops and expert-led content, we share the latest research and clinical advice.
We make complex topics accessible, amplify patient voices, and raise awareness of Alport.
We drive research by bringing together patients, clinicians, lab scientists and pharmaceutical representatives to accelerate progress.
We support global collaborations, contribute to key publications, and help shape guidelines that improve early diagnosis and mental health care. By amplifying patient voices, we turn research into real impact.
We break down silos between lived experience, clinicians and laboratory research, building the connections that make progress possible.
By connecting data, people and ideas, we facilitate the work of the global community, advancing treatments and knowledge for people living with Alport.
We raise funds to support our work and bring the community together.
From families fundraising to national events and corporate partnerships, every effort makes a difference.
Every contribution helps us support families, advance research, and inspires people to live their best lives.