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What We Do

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The PKD Charity is dedicated to the concerns of people affected by PKD - Polycystic Kidney Disease - a range of incurable, inherited, long-term, chronic conditions.

We estimate up to 70,000 adults and children are affected by the more common form of PKD - Autosomal Dominant PKD. There are approximately 2,000 children and a few adults affected by the rarer form - Autosomal Recessive PKD. Read more about PKD here.

Our Mission

We want to improve the lives of everyone affected by PKD.  We want to give hope for the future. We want to make PKD irrelevant and ultimately curable.

Our Guiding Principles

  • We support individual patients, their families and carers. We provide information about PKD at every stage of the condition. We provide reassurance and understanding, practical and emotional support.
  • We try to ensure that anyone who contacts the charity receives the help they need at the time they need it - in person, by phone, on the website, by email or in writing. We hold regular Information Days around the UK, publish newsletters and manage online support groups.
  • With money raised by supporters, we are building a research fund to enable us to support top-quality PKD research.
  • We take every opportunity to bring PKD to the attention of the media, healthcare professionals, policy makers and the government.
  • We collaborate nationally and internationally with health and social care professionals, other kidney and related genetic charities, scientists and industry to bring the latest knowledge to those affected and promote research and integrated care.

Our Strategy

Be a reliable trusted source of information and support for patients, families, medical professionals and other stakeholders:

  • People with PKD and their families find it difficult to access reliable, consistent information, which inhibits their ability to make suitable decisions about their condition
  • PKD patients and their families feel isolated by the condition and often do not know anyone else with PKD.
  • We will reach out to people affected by PKD, both patients and their families to provide advice, support and an opportunity to talk
  • We will provide information that is always evidence-based, Information Standard accredited and accessible for stakeholders, press, other charities, DH/NHS, patients, families, carers, other healthcare professionals (HCPs).
  • We will hold regular Information Days around the UK on ARPKD and ADPKD.
  • We will provide Peer-to-Peer support working with our community of PKD volunteers.

Fund research into improved quality of life

  • We will support relevant studies - either solely or jointly with other charities.
  • We will promote and prioritise the research needs of patients and families. 
  • We will develop and maintain appropriate relationships with drug companies that are researching treatments for PKD.

Act as the voice of PKD patients and families

  • Access to PKD information and services within the UK is patchy and inconsistent resulting in inequality in the services and treatments that PKD patients receive.
  • We will be a strong voice for people living with ADPKD and ARPKD that is heard by the medical profession, the NHS and government.
  • We will collaborate with and through other organisations on issues relevant to PKD patients, families and carers.

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit The Information Standard website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website