{"id":48,"date":"2019-02-19T09:09:41","date_gmt":"2019-02-19T09:09:41","guid":{"rendered":"https:\/\/kpin.org.uk\/?page_id=48"},"modified":"2021-04-30T15:08:48","modified_gmt":"2021-04-30T14:08:48","slug":"links","status":"publish","type":"page","link":"https:\/\/kpin.org.uk\/links\/","title":{"rendered":"Useful Links"},"content":{"rendered":"\t\t
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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\"kidneycare_logo_aw_rgb_2020_12_22_12_17_41_pm-695x130\"\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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Kidney Care UK<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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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.\u00a0<\/p>

They have a large amount of information on many aspects of kidney health – including dialysis, kidney function and transplantation.\u00a0<\/p>

For further information please visit www.kidneycareuk.org<\/a>.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\"KidneyResearchUK_Logo_Horizontal_Colour_RGB-01\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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Kidney Research UK<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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For information and updates about research into kidney disease, please visit www.kidneyresearchuk.org<\/a>.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\"NKF\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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National Kidney Federation<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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The NKF provide information on various kidney disease, treatment modalities and more.\u00a0<\/p>

Visit their website www.kidney.org.uk<\/a>.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\"PKD\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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PKD Charity<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Specific support for adults and children with polycystic kidney disease, an inherited condition that affects the kidneys and other organs.\u00a0

www.pkdcharity.org.uk<\/a><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\"42985447_1916849371684187_6655728230961512448_n\"\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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Young adult kidney group<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A patient-led peer support group for young adults (18-30) with kidney disease. In partnership with Kidney Care UK.<\/p>

www.yakg.co.uk<\/a><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Kidney Patient Organisations<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Renal Association Patient Council<\/a><\/strong>
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.<\/p>

The Renal Association\u2019s Patient Information Sub-committee aims to\u00a0develop 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\u00a0Kidney Care UK,\u00a0<\/a>the UK\u2019s\u00a0<\/strong>leading kidney patient support charity. https:\/\/renal.org\/patients\/information-resources\/patient-information-leaflets<\/a><\/p>

INVOLVE<\/a>
<\/strong>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.<\/p>

National Standards for Public Involvement in Research<\/a>
<\/strong>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.<\/p>

The James Lind Alliance<\/a>
<\/strong>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.<\/p>

PLRH (Patient Led Research Hub)<\/a>
<\/strong>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.<\/p>

National Co-ordinating Centre for Public Engagement<\/a><\/strong>
Helping universities engage with the public (including patients etc).<\/p>

National Voices Peer Support Hub<\/a><\/strong>
Online bank of high quality, curated resources for people looking to measure, evaluate, sustain and grow different types of peer support programmes.<\/p>

Kidney Voices for Research<\/a><\/strong>
Online community for patients with a specific interest in UK kidney research.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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International organisations<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Can-SOLVE CKD Network<\/a>: Pan-Canadian patient-oriented kidney research network.<\/p>

PACER Network:<\/a>\u00a0Australian 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.<\/p>

PCORI:<\/a>\u00a0American non-profit which funds studies helping patients and those who care for them make better-informed healthcare choices.<\/p>

Patient-Focused Medicines Development (PFMD):<\/a>\u00a0Independent, global coalition established in 2015 to be the voice of the patient across the lifecycle of medicine.<\/p>

EUPATI<\/a>: European Expert Patient Academy, providing a range of training courses.<\/p>

Health Technology Assessment (HTA) International<\/a>: Interest group for Patient and Citizen Involvement in HTA.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

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.\u00a0 They have a large amount of information on many aspects of kidney health – including dialysis, kidney function and […]<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"yoast_head":"\nUseful Links - Kidney Patient Involvement Network<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/kpin.org.uk\/links\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Useful Links - Kidney Patient Involvement Network\" \/>\n<meta property=\"og:description\" content=\"Kidney Care UK Kidney Care UK are the UK’s leading kidney patient support charity. 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