Sanofi has begun a pivotal global clinical trial to study the safety, efficacy, and tolerability of a drug called venglustat in ADPKD and is enrolling patients who are at risk of rapidly progressive ADPKD.

The Organ Donation (Deemed Consent) Bill passed its final stage in Parliament (26 February)

The Bill is expected to become law in Spring 2020. From then, all adults over 18 in England will be considered as a possible organ donor when they die, unless they choose to opt out or are excluded. This is commonly referred to as an ‘opt out’ system.

After months of evidence review and extensive consultation, NICE (the National Institute for Health and Care Excellence) has published the first Renal Replacement Therapy (RRT) and Conservative Management Guidance.

Hi, I'm Kelly Oakes, the new Fundraising Manager at the PKD Charity.

ADPKD patient Christine Mather has become the 2,000th person in Greater Manchester to take part in the 100,000 Genomes Project, which is transforming the diagnosis and treatment of rare diseases.

March 2016

A Spring Ball held at Tern Hill Hall, Shropshire Saturday 5^th March 2016 raised almost £2,000 for the PKD Charity.

February 2016

PKD Charity receives Awards for All Grants to Pilot 1-Year Telephone Befriending & Peer Support Project

January 2016

11 January 2016:The Polycystic Kidney Disease (PKD) Charity is delighted that the Scottish Medicines Consortium (SMC) Committee has, after careful consideration of all the evidence, decided to accept tolvaptan (brand name: JINARC®) for routine use by NHS Scotland.

September 2015

LONDON, 4 September 2015: Hope for families in England and Wales that a treatment option for this incurable condition will be available in the NHS by early 2016. 

August 2015

Below is a summary leaflet explaining the process and results of the Anaesthesia and Perioperative Care Research Setting Prioritisation project. The Top Ten priorities for research were identified. Questions of particular relevance to the PKD Charity are highlighted in bold.

Many thanks to everyone who took part in this project.

PKD-Charity-PSP-SUMMARY.pdf

5 June 2015

UPDATE, 26 June 2015...Today was the deadline for responding to the NICE Committee. THANK YOU everyone for your support. We will update you after the next Committee meeting on 7 July.

The Polycystic Kidney Disease (PKD) Charity is saddened and deeply disappointed that the National Institute for Health and Care Excellence (NICE) has not recommended tolvaptan within its European marketing authorisation for treating autosomal dominant polycystic kidney disease (ADPKD)^[i].

The NICE Appraisal Committee (which met on 1st April) concluded that the relative benefit of tolvaptan compared with placebo (as reported in the TEMPO 3:4 trial) is associated with some uncertainty, and also that tolvaptan is not a cost-effective use of NHS resources.

April 2015

The report from the 2014 KDIGO Controversies Conference on ADPKD has been published. The Conference was held in Edinburgh on January 17-19, 2014.  Drs. Vicente E. Torres (Mayo Clinic, USA) and Olivier Devuyst (University of Zurich, Switzerland) co-chaired this conference.

Tess Harris, CEO PKD Charity, co-chaired a sub-group of patient organisations from UK, France, Germany, Holland, Italy, Japan, Switzerland and the USA, which discussed the patients and carers perspective on ADPKD.

Download the KDIGO ADPKD Conference Executive Summary.

Download the KDIGO ADPKD Conference Full Report.

Visit the KDIGO website to see the keynote presentations and details of participants.

March 2015

• Children’s meals in ‘family friendly’ eateries STILL contain dangerously high levels of salt - habituating children to the taste of salt.
• Over a quarter of meals surveyed contain 2g or more of salt per meal - that’s the entire maximum recommendation for a whole day for a 1-3 year old – and more salt than 4 packets of crisps!
• Too much salt in childhood puts up blood pressure, which leads to strokes and heart failure
• Call for the maximum recommendation of salt for children to be lowered

February 2015

Positive result following consultation on changes to dialysis commissioning in England

Thanks to patient power and sensible inputs from nephrologists and GPs, NHS England has delayed making changes to the way that dialysis is commissioned in England - at least until April 2016.

January 2015

On 29 January 2015, the European ADPKD Forum launched its first report, the EAF Report.

January 2014

The first-ever Controversies Conference organised by KDIGO on Autosomal Dominant Polycystic Kidney Disease (ADPKD) was held in Edinburgh from 16 to 19 January 2014.

January 2014

In late December 2013, Otsuka Pharmaceutical Co Ltd submitted an application to the European Medicines Agency (EMA) for marketing authorisation of tolvaptan for the treatment of ADPKD in Europe.

October 2013

The report 'Kidney Health: Delivering Excellence' was published on 17 October 2013 and identifies the challenges ahead for the UK renal community.

August 2013

On 5 August, 2013, the US Food and Drug Administration’s (FDA) Cardiovascular and Renal Drugs Advisory Committee met to review the Tolvaptan submission for product licensing.

July 2013

NHSBT (NHS Blood and Transplant) has just issued their Organ Transplant Strategy to 2020.

March 2013

Leading European PKD patient groups join forces in a new drive to tackle lack of awareness about PKD.

November 2012

On Tuesday 6 November, 2012, 'Polycystic Kidneys' were debated in the main chamber of the UK Parliament, the House of Commons.

July 2012

The National BAME (Black, Asian and Minority Ethnic) Transplant Alliance – NBTA - was launched in July 2012. The NBTA’s mission is to bring together “people, passion and resources to address the barriers faced by those from a Black, Asian or Minority Ethnic genetic heritage needing a whole organ or stem cell transplant”.