How can we find out more about Alström Syndrome?
Help create the Alström Patient Registry.
This information will build a worldwide picture of Alström Syndrome, improving our global knowledge and understanding and leading to an increase in interest from researchers. You have the potential to make a real difference to everyone living with Alström now and in the future.
Hear from Kerry and Ann in the video below as they explore why the patient registry is so important for people affected by this ultra-rare condition, and why you shouldn’t delay, enrol today!
We also have a short-podcast, hear from Kerry about why this Patient Registry is so important and why it gives her hope:
Liz Loughery, the ASUK Project Manager launched the patient registry at the ASUK conference in October 2019, hear from Liz in this short interview below. Her presentation from the day can be accessed here.
Alström Syndrome UK (ASUK) in partnership with Sanford University are delighted to announce that the CoRDS Patient Registry will be going ‘live’ in early 2020.
Take a few moments to read over the information below and get in touch if you have any further questions.