Kidney Care UK
Kidney Care UK are the UK’s leading kidney patient support charity. They provide practical, financial and emotional support for kidney patients and their families and campaign to improve care services across the UK.
They have a large amount of information on many aspects of kidney health – including dialysis, kidney function and transplantation.
For further information please visit www.kidneycareuk.org.
Kidney Research UK
For information and updates about research into kidney disease, please visit www.kidneyresearchuk.org.
National Kidney Federation
The NKF provide information on various kidney disease, treatment modalities and more.
Visit their website www.kidney.org.uk.
PKD Charity
Specific support for adults and children with polycystic kidney disease, an inherited condition that affects the kidneys and other organs.
www.pkdcharity.org.uk
Young adult kidney group
A patient-led peer support group for young adults (18-30) with kidney disease. In partnership with Kidney Care UK.
Kidney Patient Organisations
Renal Association Patient Council
The UK Renal Registry (UKRR) is currently participating in many different workstreams. Please see the projects tab for initiatives that we are currently leading on. The research tab details the 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.
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 with a specific interest in UK kidney research.
International organisations
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.
