alport uk aim to facilitate a support network for patients and families.
Living with a rare disease like Alport Syndrome, means that often you don’t know anyone else, outside your own family, who has been through some of things you may be experiencing.
Our information days cover the latest updates in treatments and put people in touch with others who are experiencing similar challenges. Connecting people in similar geographical areas provides shared experiences of the local services and help to find out what is available for both adults, teenagers and children.
If you want to get in touch with someone local to you, please email us.