Guidance & Training
Guidance & Training
Patient-Centred Research
Patient-Centred Research
PPI & Co-Production
PPI & Co-Production
Umbrella Organisations
Umbrella Organisations

Patient Engagement Management Suite

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Practical tools to plan, assess and execute any patient engagement initiative, powered by PFMD (Patient Focused Medicines Development).
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NIHR Rare Diseases Research Landscape Report

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Presents an overall picture of rare disease research taking place across the UK over the last 5 years. Published 2021.
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Medscape Rare Disease Resources

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Online global destination for physicians and healthcare professionals worldwide, offering the latest medical news and expert perspectives; essential point-of-care drug and disease information; and relevant professional education and CME.
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‘How to’ toolkit for creating accessible condition-specific information: Genetic Alliance

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Alongside Genomics England, Genetic Alliance UK has developed a ‘how to’ toolkit to write genetic and rare condition-specific information that is accessible for people with a wide range of requirements.
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Great Ormond Street Hospital for Children NHS Foundation Trust

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Research across Rare Disease Cohorts (RDC) often requires and uses similar resources despite occurring across a vast range of diseases. In order to create cohesion across rare disease research taking place at NIHR BRC at GOSH, they have created a platform for exemplary resources to be accessed.
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Beacon Resources Hub

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Beacon is a UK-based charity building a united rare disease community with patient groups at its heart. The Resources Hub is a proud part of Beacon’s patient group training programme.
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NIHR Rare Diseases Research Landscape Report

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Presents an overall picture of rare disease research taking place across the UK over the last 5 years. Published 2021.
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Rare Disease Research UK

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11 different nodes funded by MRC and NIHR, bringing together expertise from across the UK's rare disease research system to foster new and innovative treatments for those directly and indirectly impacted by rare conditions.
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Rare Disease Research Gateway (Wales)

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Access to rare disease research ongoing in Wales, focused on genetics and genomics.
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Rare Disease Clinical Trial Network (Ireland)

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Collaboration hub that links with international expertise, and positions Ireland to be world-leading in patient access to rare disease clinical trials.
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Patient Led Research Hub

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Patient Experience Library

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Put a wealth of patient experience evidence in one place with free search and unlimited downloads; can create a diary for specific research needs.
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NIHR Be Part of Research

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A free service designed to help people with a condition who are interested to take part in ongoing trials across the UK.
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Genetics Research Awareness via Community Engagement (GRACE)

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The GRACE project researches and engages directly with communities, giving them a voice, and identifying barriers and concerns which prevent their participation in genetics.
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UKRI: Co-production in research

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Co-production in research resources include key principles, concordats, guidance and examples of good practice.
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Shared Learning Group on Involvement & Charities Research Involvement Group

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A group that meets every few months to discuss charities research involvement and PPI.
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Toolkit for patient-focused therapy development: US Health Services

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Provides information and resources about the growing role of patient voices from rare disease communities in treatment & development.
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Patient Engagement Resource Centre for Translational Researchers

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Outlines the basics of patient engagement through the different phases: from planning to conducting and evaluating.
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NIHR People in Research

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Opportunities for public involvement in NHS, public health and social care research in the United Kingdom.
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NIHR Learning for Involvement

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Resources and training about public involvement in health and social care research.
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James Lind Alliance

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Non-profit organisation supported by the NIHR, bringing patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise unanswered questions.
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International PPI Network

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Expertise sharing & evidence-based PPI good practice.
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Equality, Diversity and Inclusion Toolkit

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Developed to support researchers and research advisers to better understand how to embed equality, diversity and inclusion (EDI) in research design and to meet the National Institute for Health and Care Research (NIHR) Research Inclusion.
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Co-production Collective

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Supports co-production projects and enables others to co-produce, bringing people together to share learning and ideas, and build evidence and influence to make the case for co-production.
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Umbrella Organisations

Rare Disease Information Service (Ireland)

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Provides information about genetic and rare diseases and social care support.
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PFMD (Patient Focused Medicines Development)

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PFMD aims to transform how we understand, engage, and partner with patients globally in the design and conducting of research and development of medicines by focusing on unmet patient needs. They are bringing together relevant experts and synergising disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine.
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Orphanet

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Orphanet is a unique resource, gathering and improving knowledge on rare diseases to improve the diagnosis, care and treatment of patients with rare diseases.
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NHS Rare Disease Collaborative Networks

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Signposting to specialist hospitals and researchers working on rare conditions.
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National Organization for Rare Disorders (NORD)

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NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.
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Medics4RareDiseases

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Medics4RareDiseases is a registered charity driving an attitude change towards rare diseases amongst medical students and doctors in training.
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Genetics & Rare Diseases Information Centre (GARD)

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Public health resources supporting people with a rare disease and their caregivers by providing access to easy-to-understand information that is free and reliable.
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EURODIS

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EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.
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CamRARE

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CamRARE supports the rare community, builds multi-stakeholder networks, hosts events, undertakes research and facilitates and gives access to experts through lived experience.
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Beacon for Rare Diseases

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Action

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The leading UK-wide charity dedicated to funding vital research to help sick and disabled babies, children and young people.
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