Please give feedback on our site!

  • Take part in an inovatory study - talking to children about a genetic condition

    A new and innovatory method of supporting parents to talk with their children about a genetic family condition such as PKD, has been developed by researchers in the UK.

    Read more...

    KDIGO Conference Held on ADPKD

    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.

    Consensus recommendations were made by more than 60 globally-recognized experts.

    This was KDIGO’s 15th Controversies Conference which, for the first time, included patient representatives among its participants from Europe, the US and Japan. The PKD Charity was represented by Tess Harris, who co-chaired the patient work group which focused on 'Practical Integrated Patient Support'.

    Read more...

    Kidney Health Report October 2013

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

    Read more...
  • NICE will appraise Tolvaptan

    The Department of Health has asked NICE - the National Institute for Health and Care Excellence - to conduct an appraisal of tolvaptan for treating ADPKD (autosomal dominant polycystic kidney disease).

    This appraisal has been scheduled to align with latest regulatory expectations from the European Medicines Agency (EMA).  

    NICE anticipate that the appraisal will begin during late October 2014 when the PKD Charity will be contacted about getting involved with the appraisal.

    Read more...

    Otsuka Submits Application to EMA

    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.

    The EMA considers marketing application authorisations (MAA) at the monthly meeting of its Committee for Medicinal Products for Human Use (CHMP). It is understood that the process could take 6 months. We will let everyone know the outcome immediately.

     

Find out more about PKD

ADPKD - AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE - is the world’s most common inherited kidney disease, in which fluid-filled cysts develop, multiply and grow in both kidneys. Other organs, such as the liver and brain, may be affected. Between 1 in 400 and 1 in 1000 people worldwide - about 12.5 million - have ADPKD. Over half of those affected will have kidney failure by the time they are 60 years old. Many will experience regular pain, disabiity and anxiety throughout life. If someone has ADPKD, there is a 1 in 2 (50 percent) likelihood that the disease will pass to each child born.

Read more about ADPKD.

ARPKD - AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE - is a rare disease that affects the kidneys and liver. It occurs in about one in every 20,000 live births in the UK. ARPKD is a severe disease. Sadly, about one baby in three with ARPKD dies from breathing problems during the first four weeks after birth and some will die during pregnancy. However, 8 to 9 in ten babies (80-90 per cent) who survive the first four weeks of life are still alive at five years old. Encouragingly, a good number of children  now survive into adulthood and are able to live full and productive lives.

Read more about ARPKD.

 

Latest Tweets

PKD Charity is a Member of

Visit Ciliopathy Alliance websiteVisit PKD International websiteVisit EURORDIS websiteVisit the Genetic Alliance UK website
Visit The Information Standard websiteTransplant 2013 WebsiteNational Voices WebsiteRare Disease UK Website
Remeber a Charity WebsiteSpecialised Healthcare Alliance WebsiteFEDERG Website