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Alport Syndrome

Resources and Information

Alport UK
Alport UK is a patient-led organisation dedicated to empowering people living with Alport Syndrome to enjoy the best possible quality of life. They provide support and information for those with Alports. They also have a Facebook group called ‘Alport Warriors’ 

Kidney Research UK
Established in 1961, Kidney Research UK is the largest funder dedicated to research into the causes and prevention of kidney disease. Awareness raising as well as information and support. They also have an Action for Alports campaign. 

Kidney Kids Scotland
Kidney Kids Scotland is a Charitable Trust founded in July 2000 to help children with renal illness and their families. 

Freedom
Freedom the Dialysis Holiday Specialists are the UK’s first and only travel company that specialises in arranging holiday dialysis for kidney patients.

PatientView
PatientView shows your latest test results, letters and medicines, plus info about diagnosis and treatment. 

U-drain
U-drain is a permanently installed urine/dialysate waste drainage system, used by urostomy, catheter and peritoneal dialysis patients, which removes the need for them to use night drainage bags. 

Action on hearing loss
Action on Hearing Loss is the largest charity representing the 11 million people confronting deafness and hearing loss in the UK.
 
Beat Bullying
Online resources designed to help beat bullying (part of Family Lives – see below). 

 
INFORMATION AND SUPPORT FOR PARENTS AND FAMILIES

Family Lives (formerly Parentline Plus)
Provides confidential and free services for parents and families including a helpline, as well as online resources. Family Lives help families with any problem or challenge that they face

NHS Choices
NHS Choices provides information and advice about health, illness and health services. Specific sites relating to pregnancy screening and high blood pressure are below. 

You may also be interested in our other healthtalk sections on chronic health conditions, Kidney health, and our resources on General health and medicine, Mental health and wellbeing, Practical matters (for information on benefits, mobility etc.).

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