UK

Meet Alister

IGAN Ambassador | UK

My journey started many years ago when, after graduating from university, a GP told me during a routine exam, “you have microscopic blood in your urine, but no need to worry about it, so I didn’t worry about it,” but around ten years later after the birth of my second child, tests again showed microscopic blood and I was referred to a nephrologist who recommended a kidney biopsy, confirming IgA Nephropathy.

I started a clinical trial in November 2020, and since that day my kidney function has remained relatively stable and my protein spillage has reduced, which made me want to “give back” and help drive a front-end centre role as a UK Ambassador—working with clinicians, academics, pharmaceutical companies and, most of all, other patients—to understand the disease, support others, and raise awareness so the disease does not hold me back.

• Most common primary glomerulonephritis worldwide
• IgA nephropathy is a rare kidney disease in the UK, affecting around 1 in 50,000 people, and up to half of patients may progress to kidney failure over time.
• ~50% of patients progress to kidney failure within 10–20 years
• Typically diagnosed in young adults (20s–30s)
• The disease course is highly variable and unpredictable 

Our goal is to empower the U.K IgAN community with tools, information, and support tailored to their unique healthcare landscape

Clinical trials information

• https://bepartofresearch.nihr.ac.uk
• https://le.ac.uk/igan 

Contact

Marykate@igan.org

alisterhumphreys@igan.org.uk

Resources

• Patient Handbook: English 8-page patient handbook
• FB Group: https://www.facebook.com/groups/915274415226674/
• UK Kidney Association – https://www.ukkidney.org/rare-renal/patient-information-0/iga-nephropathy
• Kidney Care UK – https://kidneycareuk.org/kidney-disease-information/kidney-conditions/iga-nephropathy/
• Kidney Research UK – https://www.kidneyresearchuk.org/conditions-symptoms/iga-nephropathy/