External resources A-Z
Welcome to our External Resources page, a curated collection of trusted tools, guides, and organisations designed to support rare disease patient groups!
Here, you’ll find valuable links to patient advocacy networks, research foundations, mental health resources and more all tailored to the unique needs of the rare disease community.
Whether you’re seeking reliable information, support services, or insider tips, these resources are here to empower and connect you on your journey.
‘How to’ toolkit for creating accessible condition-specific information
View a ‘how to’ toolkit that can be used by charities, support groups, patient groups and the NHS to write genetic and rare condition-specific information that helps communicate complex information in ways that are easily understood.
A-Z glossary of charity terms and definitions
Charity Digital released a glossary of all phrases and terminology related to the charity sector. View a succinct description of each term!
ABPI 2024 Code of Practice e-learning module
The Prescription Medicines Code of Practice Authority (PMCPA) has published a short, free e-learning course to aid understanding of the 2024 ABPI Code of Practice. Enroll now!
Access and reimbursement: A guide for patient groups
If you enjoyed our access and reimbursement course, then download an interactive PDF version of this guide by Beacon and Realise Advocacy! If you want to learn more about Health Technology Assessments (HTA), we encourage you to view these HTA body websites.
AI resources
Discover resources and tools that can help rare disease patient groups use artificial intelligence (AI) to boost their productivity and capacity.
Guide to grief
Global Genes has created a guide tailored to rare disease grief, which is ongoing and unique to the rare community. View the five subsets of grief and explore their guide.
How to set up a charity
Progress through the logistics of setting up a charity in simple steps. View the charity set-up checklist!
How to use the NHS in Scotland
For many families, having a child with a genetic, rare or undiagnosed condition means using NHS services in Scotland with greater regularity.
This guide by Genetic Alliance UK will help you learn how to use and access NHS Scotland, as well as other key Scotland-specific information.
How to use the NHS in Wales
For many families, having a child with a genetic, rare or undiagnosed condition means using NHS services in Wales with greater regularity.
This guide by Genetic Alliance UK will help you learn how to use and access NHS Wales, as well as other key Wales-specific information.
Rare Chromosome & Gene Disorder Guides
Unique has produced a host of free Information Guides about specific chromosome and gene disorders, as well as guides translated into various languages. Explore seven categories filled with helpful, in-depth guides now!
Rare Disease Clinical Trial Network Ireland
The Rare Disease Clinical Trial Network (CTN) works to increase the quantity and quality of clinical trials in rare diseases in Ireland. Explore resources and tools specifically designed for patients, the public, clinicians, researchers, industry and more!
Rare Disease Day Equity toolkit
Rare Disease Day created a toolkit to explore what equity means for those living with a rare disease. Learn the difference between equity and equality, and discover how to achieve equity for those living with rare diseases.
Rare disease sibling resources
Siblings of those who live with a rare disease often face unique challenges and emotional complexities that are frequently overlooked.
These resources provide practical advice, emotional validation, and support to help siblings navigate their experiences while fostering healthy family dynamics.
Rare mental health resources
Explore three resources that speak to various aspects of rare mental health, such as the impact of rare conditions on self-identity, living with uncertainty, the impact of trauma and more.
REMEDi4ALL Digital Academy
The REMEDi4ALL Digital Academy is a wealth of online, on-demand training in drug repurposing. The Digital Academy, designed by REMEDi4ALL and led by Beacon for Rare Diseases and EURORDIS, is a platform that supports stakeholders throughout their drug repurposing journey. Discover the interactive “Route to Repurposing” pathway!
T-KASH Transition Tools
Explore resources designed to support young people, families, and healthcare professionals to help stakeholders better understand the transition journey and the things that are important to young people as they grow up.
Trustee resources
If you’re looking for help with your patient group’s trustees, check out these external resources for help onboarding trustees effectively, using skill audit templates to identify your board’s strengths and weaknesses and more!
Wellbeing Hub
View resources and information on diagnosis, relationships, loss and more to help you live as well as possible with your rare condition.