Useful Links

United Kingdom

Kidney Charities

 

 

Whether you’re newly diagnosed or a long term kidney patient Kidney Care UK (KCUK) have lots of information on the many aspects of kidney health – including dialysis, kidney function, and transplants.

They also offer – National Advocacy Service, counselling service, advice, information and financial support.

For further information go to www.kidneycareuk.org

 


For information and research updates www.kidneyresearchuk.org

 

NKF Logo

Information on all the different kidney diseases, treatments, and more. www.kidney.org.uk

Helpline: 0845 601 02 09

SPECIFIC KIDNEY CHARITIES

Support for adults and children with polycystic kidney disease, an inherited condition that affects the kidneys and other organs www.pkdcharity.org.uk

SPECIFIC KIDNEY PATIENT INVOLEMENT

 

 

 

The Kidney Patient Involvement Network (KPIN) is a network of kidney (renal) organisations, charities and individuals committed to quality patient and public involvement and engagement (PPI/E) who are willing to work collaboratively on initiatives to improve standards and develop patient leaders of the future.

For further information please go to www.kpin.org.uk

Renal Association Patient Council

The UK Renal Registry (UKRR) is currently participating in many different workstreams.  Please see the projects tab for initiatives which we are currently leading on.  The research tab details current work the UKRR has been involved in. The UKRR also has its own investigative groups for which further information can be found in the study groups tab.

https://www.renalreg.org/study-groups/patient-council/

The Renal Association’s Patient Information Sub-committee aims to develop and maintain a high-quality patient information resource for use by kidney doctors, patients, families and carers in the UK. The work is carried out in partnership with Kidney Care UK, the UK’s leading kidney patient support charity.

https://renal.org/patients/information-resources/patient-information-leaflets

INVOLVE – funded by the UK National Institute for Health Research to support active public involvement (PI) in NHS, public health and social care research. Their role is to bring together expertise, insight and experience in the field of PI in research. Their aim is to advance PI as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.

National Standards for Public Involvement in Research – developed by a UK-wide consortium to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored.

The James Lind Alliance – brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important.

PLRH (Patient Led Research Hub) – based in Cambridge, the PLRH supports patient-led research. They work in partnership with patient groups to deliver clinical studies based on their own research questions.

National Co-ordinating Centre for Public Engagement – helping universities engage with the public (including patients etc).

National Voices Peer Support Hub – online bank of high quality, curated resources for people looking to measure, evaluate, sustain and grow different types of peer support programmes.

Kidney Voices for Research – online community for patients interested in UK kidney research.

 

INTERNATIONAL

Can-SOLVE CKD Network – pan-Canadian patient-oriented kidney research network.

PACER Network – Australian network established in 2018 to facilitate knowledge exchange, cross-disciplinary collaboration, and innovation in conducting and implementing patient-centred outcomes research and patient involvement in research.

PCORI – American non-profit which funds studies helping patients and those who care for them make better-informed healthcare choices.

Patient-Focused Medicines Development (PFMD) – independent, global coalition established in 2015 to be the voice of the patient across the lifecycle of medicine.

EUPATI – European Expert Patient Academy, providing a range of training courses.

Health Technology Assessment (HTA) International – interest group for Patient and Citizen Involvement in HTA.

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