Alport Syndrome Alliance is an international patient-driven collaboration representing people living with Alport Syndrome worldwide.
Our vision is for effective new treatments and the best possible quality of life for everyone affected by Alport Syndrome.
As Alport Syndrome is a rare condition, we believe that by uniting to pool resources and working together as a global community, in collaboration with scientists, academics and industry, we can accelerate the development of improved treatments, diagnosis and care.
We will work towards achieving our vision by focusing on 3 key areas:
We will be a voice for those living with Alport Syndrome, raising awareness and understanding of the condition, advocating the need to advance research into therapies and growing a sense of community. Read more…
We will drive the research agenda in order to advance biomedical research and clinical trials to find new therapies, in collaboration with scientists, academics and pharma companies. Read more…
We will be a conduit for the dissemination of up to date, accessible information to patients and clinicians in order to improve diagnosis and treatment. Read more…