Fibromuscular Dyplasia

Patient Information Day on Fibromuscular Dysplasia (FMD)

Patient Information Day on Fibromuscular Dysplasia (FMD) Fibromuscular dysplasia is a condition that causes narrowing (stenosis) and enlargement (aneurysm) of the medium-sized arteries in your body. Reduced blood flow from narrowed arteries to the organs can affect the function of the organs. Fibromuscular dysplasia appears most commonly in the arteries leading to the kidneys. Fibromuscular[…]

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AKI_PPIE

AKI-PPIE Event

A researcher, Jung Yin Tsang, in association with the Manchester University and the National Institute for Health Research is looking to establish an Acute Kidney Injury-Patient and Public Involvement and Engagement group (AKI-PPIE). “I am performing a project with affiliated with the University of Manchester and NIHR SPCR, targeting AKI to improve patient safety. As part[…]

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Renal Replacement Therapy

NICE Guidelines: Renal Replacement Therapy

Renal Replacement Therapy Consultation NICE (National Institute of Health & Social Care Excellence) are planning the first-ever guidelines on preparation for Renal Replacement Therapy for both adults and children. They will apply in England only but often the other UK nations use them too. They cover preparation and planning for transplant, peritoneal dialysis, haemodialysis and conservative care (the decision not to have dialysis).[…]

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PREMs 2017

PREMS 2017 The PREMs (Patient Reported Experience Measures) survey findings for 2017 have just been released. The survey is coordinated by Kidney Care UK and the UK Renal Registry and analysed at the University of Hertfordshire. Over 11,000 patients took part and the top three areas identified for improvement were as follows: Transport to and[…]

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Sick Day Rules

‘Think Kidneys’ releases a position statement on Sick Day Rules

‘Think Kidneys’ has released a position statement on what were originally called ‘Sick Day Rules’ but more accurately be described as ‘Sick Day Guidance’.  The statement includes some inportant considerations for patients such as: “Patients may over-interpret the advice and stop their drug treatment during even minor illnesses.” “Patients may not re-start their drug treatment[…]

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Metformin: One third don’t take prescribed dose

An article from diabetes.co.uk reports research findings that one third of Type 2 diabetes patients do not take their prescribed dose of Metformin citing fear of side effects as the probable reason. For the full article please follow the link below: One in three people with diabetes prescribed metformin do not take the drug, new[…]

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BRS VA Special Interest Group

BRS VA Special Interest Group and MAGIC.

BRS VA Special Interest Group and MAGIC. In 2015 a group of staff decided to form a Vascular Access special interest group (BRS VA SIG), this consists of vascular access and haemodialysis nurses, haemodialysis patients, nephrologists, vascular surgeons and interventional radiologists. The main aim was to be able to identify, clarify and improve on best[…]

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ADPKD Information and Support Day at Salford Royal.

Salford Royal is to host its second ADPKD Information and Support Day on November 5th.  These days are invaluable if you want to learn more about the condition, how to live with it or simply to meet & chat to other patients.  To Register please use the following link; ADPKD Information and Support Day

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What does it mean to remember?

What does it mean to remember? What does it mean to forget? What might forgetting do to us and those who care for us?  Ta da ta da ta da tad a is the working title of a short performance piece by the brilliant Manchester poet and performer Louise Wallwein with music by the equally[…]

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NIHR – Film Night!

The National Institute for Health Research [NIHR], are asking you to save the date for a special film night via this link: NIHR FILM NIGHT! We hope you enjoy the experience The HOPE KPA & GMKIN Team

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HOPE Kidney Patients Association Newsletters

Welcome All, Your Autumn Newsletter is available to download here-> 03-16 HKPA Autumn 2016 You can now read the flick through version here-> HOPE KPA Autumn 2016 Newsletter IgA Nephropathy; Former NFL Player tells his story of how IgA/CKD affected his life in the sport. Home Dialysis Therapies, Respite, Recipes and Puzzles ____________________________________ With seasons[…]

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Salford Royal announces dialysis home therapies roadshow

Salford Royal’s renal team has announced a two day roadshow on August 23rd and 24th focussing on home dialysis treatments, home haemodialysis and peritioneal dialysis, which will feature two patients dialysing on the NxStage machine.  It’s worth attending even if you’ve thought that home dialysis was not for you.  Come and talk to patients who[…]

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Brexit and holiday dialysis

Information from holidaydialysis.co.uk on the effects of Brexit on holiday dialysis in Europe.  Please follow the link below. Effects of Brexit on holiday dialysis

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Human Tissue Authority recruiting Independent Assessors

The Human Tissue Authority (HTA) will be holding an Independent Assessor (IA) training event on Tuesday 27 September 2016 at Etc Venues, London. The training session will run from 9.30am – 4.30pm and lunch and refreshments will be provided.  The HTA is aware that due to increased responsibilities and budget cuts within NHS, it is[…]

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Appeal to NICE on immunosuppression medication upheld

The BKPA has announced that the kidney community’s appeal to the National Institute for Health and Care Excellence (NICE) to reverse its decision to limit approval of immunosuppression drugs has been upheld.  Follow the link below for the full announcement. Appeal to NICE on immunosuppression medication upheld

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MOTIV8 Sport Celebrity Football Match

Motiv8 Sport is hosting a Celebrity Football Match featuring a team from TV series Hollyoaks playing a team of transplant patients which includes a few from Salford Royal.  Full details below: Get Tickets  

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Dialysis Rapid Response Peer Review Visits

NHS England is looking to train and recruit healthcare professionals, patient and carers to take part in a quality review of 5 dialysis units across the north of England.  See below for details.  I have also included links to the application form and person specification.  Full training is included. “The North of England Specialised Commissioning[…]

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Kidney Quality Improvement Partnership needs YOU!

Kidney Quality Improvement Partnership needs YOU! KQuIP is a new and exciting opportunity for patients to get involved in improving the quality of kidney care across the country.  If you’d like to be involved please contact James.McCann@renalregistry.nhs.uk.  Patients’ travel expenses will be paid.  See leaflet below for more details.

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Kidneys for Life China trek

Join Neil Parrot for the Kidneys for Life China Trek 2016. You too can trek the Great Wall of China, visit Tianamen Square, the Summer Palace and the Forbidden City whilst raising vital funds for Kidneys for Life. For details: please contact carol.bonham@kidneysforlife.org or call 07714864833.

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World Kidney Day & a chance to win Coldplay tickets.

          WORLD KIDNEY DAY – 10 MARCH We’re taking the opportunity of World Kidney Day on 10 March to spread the word about kidney health and raise funds for the Southampton Children’s Hospital Kidney Awareness Charity. Did you know… 3 million people in the UK have kidney disease. Approximately a third[…]

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Tandem Skydive fundraising event for HKPA

A lot of the work that Hope Kidney Patient Association (HKPA) undertakes for kidney patients goes unseen as it works to support those kidney patients that fall between the cracks of the NHS and Social Services.  HKPA is run by committed volunteers and relies on donations to maintain its necessary support of kidney patients in[…]

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PKD Befriending and Peer Support Project Launch

With funding from the National Lottery, the PKD Charity is to launch its latest project, a PKD Befriending service, at an even hosted by the renal team at Salford Royal.  ADPKD and ARPKD patients and carers, nephrologists and other renal healthcare professionals and social workers are all welcome.  The event is free, light refreshments will[…]

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National Membranous Nephropathy Patient Forum

The Kidneys For Life organisation is hosting the National Membranous Nephropathy Patient Forum in Manchester on Saturday March 19th.  For programme and booking details please follow the link below. National Membranous Nephropathy Patient Forum

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Elizabeth’s life-saving HeRO

I was unaware of the procedure before I read the article. “Elizabeth Fraser was given the ‘best Christmas present’, a life-saving procedure at The James Cook University Hospital in Middlesbrough and now looks forward to a brighter 2016. The HeRO (Haemodialysis Reliable Outflow) graft operation– the first one of its kind in the North East[…]

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NHS hooks up with dating app Tinder on organ donations

In its latest organ donor awareness campaign the NHS has targeted younger people by partnering with the Tinder app.  From bbc.co.uk… “The NHS has partnered with dating app Tinder to raise awareness about organ donations. The app is used to find people a good personality match but for the next fortnight it will also encourage[…]

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Scots government ‘not opposed’ to opt-out organ donation

The Scottish government has decided to adopt a ‘wait and see what happens in Wales’ approach to the introduction of an opt-out system of organ donation thereby falling in line with MPs in Westminster.  I understand the concerns and remain unconvinced that opt-out as currently proposed will make much of a difference.  However, would it[…]

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Kidney patient gets transplant after seven year wait

GMKIN member Wajid Iqbal has received a kidney transplant after a 7 year wait.  The always cheery and helpful Wajid is also helping to encourage more organ donation from the Asian community.  To those of you out there still waiting for ‘that call’, don’t give up hope.  From manchesterevening news.co.uk … “A transplant patient who[…]

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Mancunians urged to become organ donors

In newly released figures there are 354 people in Greater Manchester waiting for a transplant.  From manchestereveningnews.co.uk… “A young woman, who suffered renal failure when the kidney donated by her mum failed, is amongst people urging Mancunians to sign up to the donor register. Delise Cassarino, 20, has been waiting more than a year for[…]

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Excellent patient feedback from Live Donation event

Salford Royal Foundation Trust’s renal department recently hosted a Live Donation information at Buile Park Hall in Salford.  The event was hosted by Dr Grahame Wood and featured talks from specialist nurses, a transplant surgeon and two patients, one a living donor the other a live donation recipient.  There were lots of opportunities to ask[…]

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Gizmos, Gadgets and Widgets, a free event.

News of a free event looking at exploring how public involvement and engagement can help to bring new technological developments to the healthcare market. “Do you have ideas about gadgets or gizmos that would make life easier? Can you imagine a tech solution to a health or health care issue? Do you have fresh ideas,[…]

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A study for patients with Alport Syndrome

Dr Melissa Stepney is looking for patients with Alport Syndrome to take part in a study that has the aim of developing a web resource for other patients, healthcare professionals and members of the public.  Please follow the link below for details. A study for patients with Alport Syndrome

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Artificial Kidney Research Advances Through UCSF Collaboration

From www.ucsf.edu… “Development of a surgically implantable, artificial kidney — a promising alternative to kidney transplantation or dialysis for people with end-stage kidney disease — has received a $6 million boost, thanks to a new grant from the National Institute of Biomedical Imaging and Bioengineering (NIBIB), one of the National Institutes of Health, to researchers[…]

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‘Best Poster’ award for Dr Cristina Vasilica

Dr Cristina Vasilica has won the ‘Best Poster’ award at the European Dialysis and Transplant Nurses Association and European Renal Care Association conference in Kent.  It is the third time that Dr Vasilica has won such an award for her work on GMKIN.  

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NICE releases guidelines for the use of Tolvaptan

The National Institute for Health and Care Excellence (NICE) has released guidelines for the use of Tolvaptan (Jinarc®) in the treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD).  To view the guidelines please follow the link below. NICE releases guidelines for the use of Tolvaptan

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Home dialysis options increase with new Quanta machine

Quanta, a UK based medical devices company, has been trialling the use of its SC+ machine at Nottingham General Hospital and patients are now being trained to perform Home Haemodialysis (HHD) using the machine.  For the full story from bbc.co.uk/news please follow the link below. Home dialysis options increase with new Quanta machine  

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Kidz to Adults up North Event

With thanks to Fiona Loud of the BKPA for sharing, please see below for the details of  the Kidz to Adults up North Event to be held on Thursday 19th November at Event City near the Trafford Centre.  The event covers many areas from transition through to employment and education.  

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Cornish artworks to help kidney transplant charity

Cornish artworks are to feature in a special auction to raise funds for doctors and surgeons to travel to developing countries to treat children and adults suffering with kidney disease.  From westbriton.co.uk “An art auction to raise money for a Falmouth-based charity will include works from local artists. Charity Transplant Links Community is hosting the[…]

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Can ‘Mindfulness’ help dialysis patients?

Renowned American nephrologist Joel Topf has proposed a study which aims to test the theory that mindfulness can reduce depression in dialysis patients.  It is reported that between 20 and 30% of dialysis patients will suffer depression.  From medpagetoday.com… “End-stage renal disease (ESRD) is a growing problem in the United States. There are more than[…]

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Scientists Use DNA ‘Velcro’ To Print Human Tissue In The Lab

Another strand of research looking into creating replacement organs using the recipients own cells. From huffingtonpost.com – “We need more organs. At any given moment, more than 123,000 Americans are waiting for an organ transplant. Each year, 6,500 of them die for want of a donor. Moreover, between 15 and 50 percent of patients lucky[…]

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NICE reconsider and recommend Tolvaptan

Breaking news: NICE has reconsidered its decision not to recommend the drug Tolvaptan (Jinarc) for the treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD). Huge thanks to Tess Harris and her team at PKD Charity UK and everyone who took the time to submit comments during the consultation period. NICE reconsider and recommend Tolvaptan

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Changing the Dance

A blog from the ever stimulating Anne Cooper (@anniecoops) on the relationship between the clinician and the chronically ill patient. Changing the Dance

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NICE reviewing the prescription of immunosuppression drugs

It doesn’t appear to have been widely reported but the National Institute for Health & Care Excellence (NICE) is currently reviewing the prescription of immunosuppression drugs to transplant patients.  The consultation process has now closed and decisions will be made later this year however one of the initial recommendations is that Advagraf is no longer[…]

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Autumn issue of NKF’s Kidney Life magazine

Please follow the link below to read/download the latest issue of the National Kidney Federation’s Kidney Life magazine.  It includes an article on a novel approach to home haemodialysis ‘on the road’. Autumn issue of NKF’s Kidney Life magazine

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Engineering modelling techniques applied to a dialysis patient’s day

“Engineering consultancy Frazer-Nash, working closely with Nottingham University Hospital, has demonstrated how engineering modelling techniques can be used to provide insight into a patient’s day in a renal unit – and through a better understanding of an individual’s dialysis day, identify tangible ways to improve the overall patient experience.”  For the full story please follow[…]

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Research opportunity from the SONG Initiative

The Standardised Outcomes in Nephrology (SONG) Initiative is looking to recruit HD patients, the family members or carers to take part in an international survey about the effects of treatment and care. SONG – an international survey about the effects of haemodialysis Are you a patient on haemodialysis or a family member or carer for[…]

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Manchester hospital performs record number of kidney transplants

MRI hospital has the broken the record for the number of kidney transplants performed in a month.  From mancunianmatters.co.uk – “A record-breaking number of successful, life-changing and saving kidney transplants have been carried out by the Renal Transplant Team at Manchester Royal Infirmary (MRI). The previous national record of 32 transplants was also outdone in[…]

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Patient’s 30-year wait for kidney transplant

After waiting for thirty years and with 100% antibodies David Dawson finally received a kidney transplant.  The moral is, “Never give up hope”.  From stokesentinel.co.uk – “David has finally got a new kidney – after waiting 30 years for an organ transplant. The former jewellery restorer had resigned himself to a life of dialysis treatment[…]

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How North East is leading the way in organ transplant care

As the British Transplant Games arrive in the north-east this week the Newcastle Evening Chronicle, which has done so much in the past 12 months to promote organ donation, takes the opportunity focus on the work done at Newcastle’s Institute of Transplantation.  From chroniclelive.co.uk – “There have been a number of medical miracles over the[…]

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Live Donor – Information Event

A date for your diary, Salford Royal’s renal department will be hosting a Live Donor information event at Buile Park Hall, Salford on Sunday September 20th between 11am and 3pm.  I’ll post further details of the event when I have them.    

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Dying Brits pay £75,000 for transplants on Facebook

News from mirror.co.uk of the murky world behind organs for sale racket. “Criminal gangs are cashing in on the poor and terminally ill by setting up deals to flog kidneys for transplants. And some penniless people are so desperate for money just to survive they are willing to sell their organs on Facebook for as[…]

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Spain performs first all-robot transplant in EU

Surgeons in Barcelona have carried out the first completely robotic kidney transplant on a 25 year old woman with Alport Syndrome.  From thelocal.es – “A team of urologists from the Fundació Puigvert in Barcelona have successfully overseen a kidney transplant performed completely by robots, the first of its kind in all of Europe, they announced[…]

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Get trucking to boost organ donations

The owners of a Burnley based haulage company whose mother received a kidney transplant have launched an organ donation awareness campaign.  From burnleyexpress.net – “Two successful businessmen brothers, whose mother’s life was saved after she had a kidney transplant, are hoping their own life changing experience will encourage others to become organ donors. Stephen and[…]

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New Diabetes Test Could Offer ‘Real Freedom’

A new device could mean that people with diabetes no longer have to monitor their blood sugar levels by pricking their finger to test their blood.  From news.sky.com “An engineering breakthrough could mean that diabetics will no longer need to draw blood to monitor their condition. The new technology, developed by Professor Gin Jose and[…]

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The birth of nephrology?

A lovely little blog on Richard Bright who is regarded as the founder of the speciality of nephrology.  Please follow the link below. The birth of nephrology?

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North east and North Cumbria Patient, Family and Carers Day

The Tyneside Kidney Patients Association is hosting a Patient, Family and Carers Day in Newcastle on August to which all are welcome to attend.  For those who are interested but can’t attend they are also hosting a live and interactive web feed of the day’s events.  Please follow the link below for more details. North[…]

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Biker escort takes ‘miracle’ teenager Beth to her prom

A social media plea from her father to help make his teenage daughter’s prom night special saw her travel to the event in a Ferrari escorted by a biker escort.  Bethany Crocker, 16,  who has Polycystic Kidney Disease (PKD) wasn’t expected to live beyond the age of two.  From plymouthherald.co.uk – “A “Miracle” teenager who[…]

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The health system’s struggle to get more black and Asian donors

There have been several campaigns to increase the number of organ donations from Asian communities, most notably and arguably most successfully, Agimol Pradeep’s outstanding work in this area.  However the problem remains as highlighted in this article from the BBC website – “Despite several NHS publicity campaigns, only 4% of the 21 million people on[…]

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NxStage launches a new website

NxStage today launched it’s new look website featuring new information on the company and its products.  There’s also a video of one of NxStage’s patients.  As more of us are encouraged to self manage and dialyse at home it’s machines like the System One that enable dialysis patients to follow a more flexible regime, tailored[…]

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Targeted Drug Delivery Method Could Slow Progression of PKD

With the recent decision from NICE not to approve Tolvaptan (Soliris) for the treatment of Polycystic Kidney Disease articles like this that hint at other possible avenues of treatment always lift my mood.  From scicasts.com – “For the 12 million people worldwide who suffer from polycystic kidney disease (PKD), an inherited disorder with no known[…]

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The Economics of Organ Donation

So many of the decisions in healthcare are driven by cost but some of those decisions seem to miss the financial benefits of considering the wider ramifications.  The Swiss are basing an organ donor campaign on just that basis.  From swissinfo.ch – For the full story please follow the link below. The Economics of Organ[…]

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Record number of organ donors in Worcestershire

Despite the inherent sadness of someone dying it is good to hear that the number of organ donations in some parts of the country are on the rise.  From worcesternews.co.uk – “Worcestershire is leading the way in patients choosing to donate their organs after their death. Between April 2014 and March this year 12 patients[…]

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From America: Why we need a market for organs

There is a shortage of organs for donation in countries around the world with the exception of Iran where the state buys organs for transplantation.  This article from huffingtonpost.com proposes that America introduces a similar, state regulated market.  For the full story please follow the link below. From America: Why we need a market for[…]

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Girl Gets Dad’s Kidney In Revolutionary Op

Teenager Charlotte Archer-Gay has received a kidney transplant from her father despite them not being a match.  Surgeons carried out a process known as plasmapheresis to remove antibodies from the donor organ which permitted the operation, rare in children, to go ahead.  From uk.news.yahoo.com – “A father has been able to donate one his kidneys[…]

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Hospitals urge Muslims to donate organs

Hospitals in the West Midlands are urging Muslims to consider donating their organs.  Typically Muslims have to wait a year longer than non-Muslims for a suitable donor organ to become available.  From bbc.co.uk/news – “Hospitals in the West Midlands are urging Muslims to consider donating their organs for patients waiting for transplants. Muslims needing an[…]

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National Transplant Week Parliamentary Reception

The British Kidney Patient Association along with NHS Blood and Transplant is holding a parliamentary reception as part of National Transplant Week in September where patients can meet their MP.  The event is kindly sponsored by Yasmin Qureshi MP for Bolton South-East and a great supporter of the kidney community.  For the full details of[…]

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Rochdale 7 year old beats illness to walk for the first time

Seven year old Ella Chadwick, who was born with a rare illness, has started to walk following her second kidney transplant.  From itv.com – “Her parents feared they may never see her walk but a brave seven-year-old from Rochdale has proved them wrong and taken her first steps. Ella Chadwick needed a life-saving kidney transplant[…]

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Ethnic organ donor campaign

Royal Blackburn Hospital has been used as the backdrop to a new organ donation campaign video targeting Asian communities.  From lancashiretelegraph.co.uk – “A poignant video has been launched as part of an campaign to increase the number of black and minority ethnic communities on the organ donor register. Around a hundred people gathered for the[…]

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New smaller dialysis machine purifies water, creates dialysate

Outset Medical has received $91m in funding for its new dialysis machine, Tablo.  From nephrologynews.com – “The company will use proceeds from the financing to begin a controlled commercial introduction this year and to pursue expanded FDA clearance to allow patients to use Tablo at home. The FDA recently approved an investigational device exemption (IDE)[…]

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