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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.

To realise our mission, we have identified four strategic core objectives to frame and guide our work over the next four years. We want everyone affected by PKD to have the best quality of life by:

1   Being the ‘Go To’ place for PKD in the UK

The Challenge:

  • 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.
  • The PKD Charity will be the ‘Go To’ place for information about ADPKD and ARPKD for patients, families, medical professionals and other stakeholders.

We will do this by:

  • Providing 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).
  • Holding regular Information Days around the UK on ARPKD and ADPKD.

2   Funding research into improved quality of life

The Challenge:

  • The quality of life of people living with PKD varies considerably from patient to patient and at varying stages of the condition.
  • This means that people have little information about what to expect from the condition and often receive conflicting advice from the medical profession.
  • The PKD Charity will fund research that will identify how to improve the quality of life of people living with PKD.

We will do this by:

  • Commissioning research into early intervention with a focus on nutrition.
  • Supporting relevant studies either solely or jointly with other charities.

3   Reaching out so people don’t feel alone

The challenge:

  • PKD patients and their families feel isolated by the condition and often do not know anyone else with PKD.
  • The PKD Charity will reach out to people affected by PKD, both patients and their families to provide advice, support and an opportunity to talk

We will do this by:

  • Employing outreach workers to meet with people affected by PKD to discuss their needs and concerns and signpost them to suitable support services.
  • Providing Peer-to-Peer support through a network of PKD volunteers based at renal units around the UK.
  • Developing and engaging with a passionate 'tribe' of PKD champions who provide friendly advice and support to people in their local area affected by PKD.

4   By being the voice of PKD patients and families

The challenge:

  • 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 create a single voice for people living with ADPKD and ARPKD that is heard by the medical profession, NHS and government.

We will do this by:

  • Advocating with and through other groups on issues relevant to PKD patients, families and carers.
  • Representing the concerns of patients, families and carers in government (in partnership with other charities where appropriate) on 4 key issues: transplantation, free prescriptions, inequality to access in benefits and access to unlicensed trial drugs.
  • Campaigning to implement nationally commissioned specialised services for ARPKD and ADPKD.
  • Developing and maintaining appropriate relationships with drug companies that are researching treatments for PKD.

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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
  • National Voices Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website