alport uk is a patient-led organisation dedicated to facilitating a support and information network for all those affected by Alport Syndrome.
To ensure that all individuals and families with Alport Syndrome feel empowered to enjoy the best quality of life.
Working in partnership with individuals, families and the scientific community we will:
- Facilitate a support network for patients and families
- Be a conduit for high quality, accessible information
- Raise the profile of Alport Syndrome in the scientific community
- Contribute to the international research agenda
- Collaborate on the development of a UK patient registry and alliance of international patient registries.