Action for Alport's Campaign
Breaking Through Rare Kidney Disease
The Action for Alport’s Campaign was created in partnership with Kidney Research UK in 2011. Its founder, Deborah Fielding, initiated this new branch of the charity as a commitment to breaking through rare kidney disease and finding a cure for Alport’s Syndrome.
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Mission statement
The Campaign has been established to raise money towards dynamic and dedicated research into Alport’s Syndrome. It aims to raise awareness and understanding of the illness, provide better care for patients, improve the future for sufferers and ultimately facilitate faster diagnosis and better management for those affected by the disease.
Funds raised will be invested in a specialist working group to drive the Campaign forwards, whilst working alongside the UK’s top kidney scientists and doctors to fulfill our mission statement and bring an end to suffering from Alport’s Syndrome.
Launch
To mark the launch of the Campaign, an inaugural meeting of the Alport’s Syndrome Rare Disease Working Group was held at the House of Lords on Friday 11th February 2011. The meeting discussed and identified key priorities in research and care for those affected by this rare kidney disease. It was a truly remarkable day full of optimism and enthusiasm to drive the Campaign forwards.
Professor Neil Turner, Kidney Research UK’s Chairman, discussed the UK Rare Kidney Disease Strategy and gave an overview of Renal Patient View, looking at how it could be used to pool patient data and help investigate rare diseases such as Alport’s.
Deborah Fielding talked about her experiences of Alport’s, and outlined the overall aim of the campaign.
Professor Colin Baigent, Professor of Epidemiology and Honorary Consultant in Public Health at the Nuffield Department of Clinical Medicine in Oxford, was diagnosed with Alport’s Syndrome as a child, and provided a unique viewpoint in being both a patient and an academic with an interest in the renal field.
Dr Frances Flinter, Consultant in Clinical Genetics at Guy’s & St Thomas’ NHS Foundation Trust, gave give an overview of current and future activities in renal genetics. Having been involved in Alport’s Syndrome research for 25 years, Dr Flinter is world-renowned and her lab in London is a key reference centre.
The event also encompassed the first meeting of the Rare Disease Working Group - Alport’s Syndrome. This group has been established to bring together patients and professionals to focus on delivering improvements in care and patient information as well to develop and run new research projects. The ultimate goal is delaying or preventing the onset of this specific type of kidney disease.
To view the detailed report of the launch event, including a transcript of an informative question and answer session, please click here
Who Was Alport?
Born in the late 1800s, Professor Arthur Cecil Alport was a South African physician educated at Edinburgh University. He practiced medicine throughout the world, including an extended tenure as Assistant Director at St Mary’s Hospital, London.
Whilst working on this newly established unit he discovered a series of medical similarities in a family he was treating, which led him to recognising the recurring symptoms of blood in the urine (haematuria), deafness in males and renal failure, as being a clinical syndrome spanning several generations. He reported his findings on this rare kidney disease in the British Medical Journal in 1927, but it was not until 1961 and shortly after his death that the condition was named after him.
How Can I Get Involved?
There are lots of ways you can get involved, from taking part in our high profile Campaign events, to joining in one of our programmed challenge activities.
To keep up to date with all the Campaign news in 2011, please register for our e-news Campaign letter.
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