alport uk collaborates with the scientific community, researchers, doctors, clinicians, academics, pharmaceutical companies and other national patient groups on an international basis. Within this framework, we can work to create a strong, united voice to advocate investment in the research needed into Alport Syndrome.
Our collaborative efforts will focus on:
- Working in partnership with others to raise awareness of Alport Syndrome, its symptoms, diagnosis and treatment.
- Raising the profile of the need for more research and more investment into understanding and managing of Alport Syndrome.
- Being a conduit for high quality guidance and information to ensure patients and their families, and doctors and clinicians have access to clear, accessible and up to date research, facts, guidance, useful resources and information that help make their jobs easier and improve the quality of care they are able to give.
- Connecting and collaborating on international activities, campaigns, projects and conferences and driving the agenda for new research.
- Developing a UK-specific patient registry and aiming to build links with registries of patients in other countries in order to enhance the quality of research trials.