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.
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.