We drafted a brief for a review of psychosocial support for those living with Alport Syndrome
In a survey we ran at the end of last year about your priorities for research into Alport Syndrome, both patient and clinician responses highlighted the need to review what social and psychological support is available to help patients and families living with Alport Syndrome. The plan is to interview people living with Alport Syndrome about their needs and ideas for solutions. The project is dedicated to the memory of Anthony Whitworth. We have a target of £75,000 to raise to fund a researcher for 18 months to do this review. Please email us know of anyone who would like to contribute funding or ideas for the review.