The voice of Nephrotic Syndrome
At NeST, we care because we understand. Our founders have the perfect balance of expertise and empathy and they know just how challenging it can be living with the condition yourself or caring for a child who has it. Over ten years ago, our founder David Yearsley felt isolated when his son James developed Nephrotic Syndrome as a child.
Fearing other people would feel this way, and dismayed at the lack of research into this syndrome, in 2005 he set out his vision: to give Nephrotic Syndrome a voice, educating people that were unfamiliar with the condition and helping people young and old, from all walks of life, cope better knowing all their options. Working alongside Professor Moin Saleem – an expert in the field of Paediatric Renal Medicine and Consultant Paediatric Nephrologist at Bristol University Children’s Hospital, the pair created the trust to:
How the money is used
Our research is funded entirely by donations and every penny goes directly to the trust so you can be confident that when you donate, you’re making a huge difference to the wellbeing of people managing Nephrotic Syndrome every day of their lives. Your small change makes a big difference. We appreciate every generous donation, just like the thousands of people in the UK who hope one day that we will raise enough money to be able to find a cure.
It’d be great if the equipment we used was free, but because of its technical and advanced make-up, it’s very expensive. Plus, we also need to make sure the people running the Specialist Kidney Unit in Bristol’s Children Hospital are paid too.
When you donate to NeST, your money is invested in a whole host of equipment, from simple tools like glassware to state-of-the-art equipment such as our PCR machine, which is able to produce thousands of copies of DNA so that we can see if a gene is important in causing the disease process.
Sometimes your money might be used to purchase antibodies too so we can see how your body might respond to different treatments without using any actual guinea pigs or people!
Kidney Research UK
Kidney Research UK are a national charity dedicated to research that will lead to better treatments and cures for kidney disease.
Sign up to patient view allows to access your results online. Ask you consultant,or community nurses at the hospital to enrol you and within a few weeks you will be given password access.PatientView shows your latest test results,letters and medicines, plus info about diagnosis and treatment. Set up alerts, monitor symptoms and download your records. You can view PatientView from anywhere you want and share your information with anyone you want.
This is a registry of information on patients with rare kidney diseases. This information can be accessed by healthcare professionals and patients to allow them to share their knowledge
Kids Kidney Research
This was set up by people with friends and family who were affected by kidney disease. They support the research into paediatric kidney disease
The Academic Renal Unit
The Academic Renal Unit aims to achieve excellence in research whilst benefiting patients with kidney diseases
Kidney Care UK
The charity was founded in 1975 by Elizabeth Ward, after her 13 year old son was diagnosed with kidney failure. The British Kidney Patient Association is a well established charity working to improve the quality of life for adults and children with kidney disease
National Kidney Federation
This is the National Kidney Federation (NKF) charity – a national kidney charity run by Kidney Patients for Kidney Patients
Since being founded in 1950 the Renal Association has promoted and encouraged research into kidney diseases to ultimately improve the outcome for the patients
NephcEurope is a European wide working patient-organization and fundraising foundation in the field of Nephrotic Syndrome.
The Nephcure Foundation
The Nephcure Foundation is the only non-profit organisation committed exclusively to support research seeking a cause for two potentially devastating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomeruloscierosis (FSGS), aiming to improve treatment and find a cure
Medicines for Children
Medicines information leaflets cover many of the medicines that are prescribed or recommended to children by health professionals.