All resources (A-Z)
Welcome to our A-Z Resource Library, your comprehensive guide to all available courses, event recordings and more!
Here, you’ll find a curated list of resources covering a wide range of topics, organised alphabetically for easy navigation.
Whether you’re looking for guidance on fundraising, registries, recruiting trustees or something different, our library has it all.
Explore each resource to find valuable insights, support services, and educational materials tailored to help you succeed.
Start browsing to discover the resources that best meet your needs now!
#iDR24 International Drug Repurposing Conference
This spring we teamed up with REMEDi4ALL and MeRIT to deliver the first international drug repurposing conference, #iDR24 on 6th – 7th March 2024 in Barcelona. Watch the recordings now!
10 key platforms patient groups use to enhance their capabilities
Learn 10 key platforms that patient groups use to help them grow in knowledge, capacity and confidence. View them now to see what each platform can help you achieve!
7 tips for recruiting trustees to your rare board
Learn 7 top tips for recruiting trustees to your rare board from Katherine from Getting OnBoard! Discover how to attract a diverse Board of Trustees who offer the unique skills and perspectives needed to ensure the success of your organisation.
Access and reimbursement
In this course, you'll learn how patient access to new treatments is obtained and how the HTA process works. Discover where and how patient groups can contribute to the process and when patient groups should start to consider access.
Boost your patient group’s productivity using AI
In this webinar, you'll explore how rare disease patient groups can use AI to boost their productivity.
Building a rare disease registry
In this course, you'll learn how to use a patient registry and apply the data contained within it to make an impact. Explore the steps involved in setting up a patient registry and the important considerations for maintaining one.
Building an international patient registry
In this webinar, you'll explore the benefits, challenges, key considerations, rules and regulations of running an international rare disease patient registry.
Building your patient group data to drive research
In this webinar, you'll explore how patient groups can utilise technologies and opportunities to put patient datasets at the forefront of cutting edge research.
Cambridge Rare Disease Showcase 2023
The Cambridge Rare Disease Showcase 2023 brought the rare disease community together to network and celebrate the innovative projects going on in the UK.
Cambridge Rare Disease Showcase 2024
The Cambridge Rare Disease Showcase 2024 returned to The Clayton Hotel on 2nd October 2024 for our 8th Cambridge Showcase to date. This year we are proud to say that we welcomed over 90 rare disease advocates from across the field – our largest showing in Cambridge yet! Watch the evening's lightning talk presentations now.
Collaborating with medical professionals
In this course, you'll learn how to foster collaborative interactions with medical professionals. Discover ways to get involved with medical education and outreach and learn how these interactions can build value for both patient groups and medical professionals alike!
Decoding diagnostics webinar series
Through a series of webinars and discussion sessions, we’ll explore the fundamental principles of genetic testing, delve into the methods and applications available, and provide practical insights on accessing, interpreting and supporting genetic diagnostic results.
Developing a peer support programme
Learn how to establish and maintain a successful peer support programme. Hear from three patient group leaders who are currently running a peer support programme about their experiences, advice, and reflections.
Developing medical guidelines
In this course, you'll learn what medical guidelines are and why they're important for rare diseases. Discover how to develop and publish your own medical guidelines within the NICE framework now!
Developing your rare disease patient group from the bottom up
In this webinar series, you'll explore how rare disease patient groups can attract and retain the right people to ensure the success and longevity of their patient organisation. Discover how to attract and manage volunteers, employ staff and begin succession planning.
Drug Repurposing
In this course, you'll explore how drug repurposing can be a more efficient and cost effective way to develop treatments for rare diseases. Learn the benefits and challenges associated with drug repurposing, the important considerations to make when setting up a drug repurposing project and how patient groups can support these projects!
Drug Repurposing Conference 2019
On 27th February 2019, we held our sixth annual Drug Repurposing for Rare Diseases Conference, welcoming over 100 people to the event.
Drug Repurposing explained
In this webinar, you'll gain a comprehensive introduction to drug repurposing, its benefits and an overview of what's involved in repurposing drugs.
Drug Repurposing for Rare Diseases 2017
On the 28th February 2017, we held our fourth annual Drug Repurposing for Rare Diseases Conference at the Royal College of Nursing in London.
Drug Repurposing for Rare Diseases 2020
On 24th February 2020, we held our seventh annual Drug Repurposing for Rare Diseases Conference, welcoming 125 people to the event.
Drug Repurposing for Rare Diseases 2021
Drug Repurposing for Rare Diseases 2021, a two-day virtual event, looked at what drug repurposing is, how to find treatments through drug redevelopment, overcoming challenges in getting treatments to patients and much more.
Drug Repurposing for Rare Diseases 2022
On 10th October 2022, we held out ninth annual Drug Repurposing for Rare Diseases Conference at America Square Conference Centre in London.
Drug Repurposing for Rare Diseases Conference 2018
On 27th February 2019, we held our fifth annual Drug Repurposing for Rare Diseases Conference at the Royal College of Nurses, London.
Ensuring inclusive communication around genetics
In this webinar, you'll explore the role genetics play as a tool to accessing diagnoses and understanding rare conditions. Learn the barriers to understanding genetic diseases and discussing their inheritance.
Evaluating the potential of drug repurposing for rare disease and Covid-19
In this webinar, you'll explore the role drug repurposing has played in identifying treatments for COVID-19 and how we can apply these same practices to rare diseases.
Exploring the ethics of genetic testing
Genetic testing comes with complex ethical dilemmas, especially for those living with rare diseases. Learn a basic background of what genetic testing is and discover both the for and against arguments for it.
Get ready to recruit: How to prepare your charity for growth
On the 11th October 2024, we hosted a webinar for rare disease patient group leaders who are considering recruiting in the future. Watch the webinar now to learn the essential elements of preparing to hire for a patient organisation.
Getting started with medicines repurposing
In this educational series, learn how patient groups, academics and researchers can get started with medicines repurposing. Watch all three webinar recordings to learn how to take your drug repurposing idea to the next level!
Getting the most out of Facebook
In this course, you'll explore if Facebook is right for your patient group. Learn how to set up a Facebook page, when you should post on Facebook, 8 top tips for getting the most out of the platform and more!
Getting the most out of Instagram
In this course, you'll learn Instagram's benefits for patient groups, the ways you can post on the platform and discover 8 top tips to help you improve your account in 1 hour or less!
Getting the most out of LinkedIn
In this course, you'll explore the benefits of having a LinkedIn company profile for your patient organisation. Gain 8 top tips to help you improve your account in one hour or less!
Growing your patient community by identifying patients and groups online
In this webinar, you'll discover opportunities to signpost to your organisation online using rare disease databases, online forums and membership lists.
Harnessing the power of social media
Watch this top tip video guide to navigate social media platforms with confidence! Learn more about the different platforms and discover top tips for creating engaging content that yields meaningful results on them.
Health literacy explained
In this webinar, you'll gain a comprehensive introduction to health literacy and how to develop and write information with health literacy in mind.
Health Utilities and How to Measure Them
In this course, you'll learn why it's important to measure health. You'll explore what a utility value is and how it's used to measure health, plus weigh the pros and cons of using different methods to obtain utility values and more!
Help! We need to diversify our board
In this webinar, you'll gain an introduction to how to diversify your charity board. It will be a whistle-stop tour of all the things you need to do to successfully run an open recruitment process with diversity at its heart.
How do scientists make a genetic diagnosis?
In this course, you'll learn how scientists make a genetic diagnosis. Explore DNA sequencing for genetic testing, such as Sanger Sequencing and Next-Generation Sequencing, and Chromosomal testing, such as karyotyping, fluorescence in situ hybridisation (FISH) and Chromosomal microarray. Enroll now!
How does genetic variation lead to a rare disease?
In this course, we go a step further from our Introduction to genetics course to look at different types of DNA mutations, as well as fertilisation and reproduction. Enroll now to learn about DNA replication, transcription, translation, chromosomal abnormalities and more!
How patient groups can get involved in research and trial design
In this course, you'll learn the various stages where patient groups can get involved in research and trial design using expert patient group case studies from those who have successfully done so with their organisation.
How to select appropriate patient-reported outcome measures and advocate for these to researchers
In this course, you'll learn what patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) are and discover how to decide the most relevant patient-reported outcome measures for your patients. Explore how to discuss patient-reported outcome measures with researchers, and advocate for the best ones for your patient community now!
Imposter Syndrome: How to turn your inner critic into your biggest cheerleader
If you’re grappling with self-doubt or imposter syndrome – you are not alone! Enroll now to learn actionable strategies and techniques that will help boost your confidence and help you manage your imposter syndrome. It's time to turn self-doubt into a motivational force.
Introduction to advanced therapies
In this course, you'll learn about advanced therapies and their pros and cons. Learn how gene therapies are trialled and accessed, plus explore rare disease gene therapy success stories that made the news!
Introduction to genetics
In this course, you'll learn how DNA, genes, proteins and chromosomes are formed. Explore how genetic variants and inheritance work, plus which types of genetic tests are available today. Discover what happens when undergoing genetic testing and more!
Introduction to prenatal screening
In this course, you'll learn what prenatal testing is and the different types of tests that are
involved in the process. Explore the benefits and risks of prenatal testing and hear a case study from a patient group leader who has experience with prenatal testing.
Maximising engagement with HCPs
In this webinar, you'll explore the practical things that patient groups (no matter what size or capacity) can do to engage with HCP’s in the most beneficial way. Learn what other groups are doing to effectively and sustainably engage with medical professionals.
Measuring Quality of Life
In this webinar, you'll explore ways to measure quality of life in rare diseases for the purpose of health technology assessment. Discover ways that patient organisations can get involved in the process.
Medical Research explained
In this webinar, you'll learn an overview of the medical research field and the different stages of pre-clinical and clinical research needed to take an idea to a treatment.
Natural history studies for rare diseases
In this webinar, you'll explore the importance of natural history studies to the rare disease community and how the data from such studies can be used to improve clinical trials and the pathway to therapeutic development.
Navigating Health Technology Assessments
In this webinar, you'll learn how to prepare for HTA and hear from other patient groups on their unique experiences of navigating the process.
Navigating the Cost of Living Crisis
In this webinar series, you'll explore how rare disease patient groups can navigate the challenges associated with the Cost of Living Crisis and build resilience into their strategy and operations. We discuss setting funding priorities and managing risk.
Patient engagement in medical research
In this webinar, you'll learn the importance of engaging patients in medical research and the methods for doing so.
Patient group and charity collaborations
In this course, you'll learn the steps involved in setting up a collaboration and the strategic questions which need to be asked. Explore how to effectively work together and adapt goals and priorities, so you can navigate potential issues with confidence!
Patient group structures: finding the right fit
Learn different ways patient groups can be structured, depending on their goals, resources, and scope. Gain practical insights into some of the benefits and limitations of each structure, along with real-life examples of groups that have chosen different paths.
Rare disease research and trial design
In this course, you'll learn the basics of clinical research and how patient groups can get involved with research into their rare disease. Explore how clinical research is traditionally structured and more!
Recruiting and managing trustees
In this course, you'll learn what trustees do and how you can tell the difference between a successful board and a board that is holding you back. Discover how to recruit and manage trustees effectively and learn where to advertise for new trustees!
Recruiting and managing trustees
In this webinar, you'll explore how rare disease patient groups can establish efficient trustee boards that help set their organisation up for success. Learn how to recruit and manage trustees.
Supporting mental health
In this course, you'll gain a background on mental health in the rare community. Learn the importance of protecting people's mental health and how to set up policies to do so. Explore how to support those experiencing poor mental health, grief and loss using examples of approaches used in the rare community.
Supporting the nutritional management of your rare community
In this course, you'll learn different options for disseminating nutritional management information to your community to help them adhere to a specialised diet. View examples from patient groups who have developed and distributed nutritional information about their rare condition!
The Cambridge Rare Disease Showcase 2017
On Thursday 24th August 2017, Beacon hosted The Cambridge Rare Disease Showcase, welcoming over 40 delegates to the event.
The Cambridge Rare Disease Showcase 2018
On Thursday 16th August 2018, 40 delegates from the across the rare disease community joined us to hear about the latest developments taking place in Cambridge.
The Cambridge Rare Disease Showcase 2019
On Thursday 8th August 2019, we hosted our annual Cambridge Rare Disease Showcase at Espresso Library, Cambridge. Joining us were over 60 delegates, representing all facets of the rare disease community.
The Cardiff Rare Disease Showcase
Beacon’s fourth networking event was held on Thursday 4th May at the Life Sciences Hub Wales.
The fundamentals of fundraising without a fundraiser
This webinar covers the fundamentals of fundraising for organisations that don't have a dedicated fundraiser.
The Glasgow Rare Disease Showcase
On Wednesday 10th October we hosted The Glasgow Rare Disease Showcase, welcoming 78 delegates from across the UK to hear about the extensive work taking place in Scotland’s thriving rare disease community.
The International Rare Disease Showcase
The International Rare Disease Showcase brought the global rare disease community together to celebrate innovative projects across the UK and far beyond.
The LGBTQ+ rare reality
In this course, you'll learn statistics about health outcomes for the LGBTQ+ population in general and when living with a rare disease. Gain a better understanding of the LGBTQ+ rare reality, so they can better support and engage with this underserved community.
The London Rare Disease Showcase 2023
The London Rare Disease Showcase 2023 brought together rare community stakeholders to celebrate new developments in the field and foster meaningful new connections. Explore recordings and photos from the day!
The Manchester Rare Disease Showcase
On Tuesday 8th October 2019, we hosted The Manchester Rare Disease Showcase at Bridgewater Hall, Manchester.
The National Lottery Funding, opportunities during Covid-19
In this webinar, you'll explore the new COVID-19 response funding schemes offered by the National Lottery Awards for All scheme and National Lottery Community Fund.
The Newcastle Rare Disease Showcase
On Tuesday 31st October, Beacon hosted The Newcastle Rare Disease Showcase at Newcastle’s Centre for Life.
The Virtual Rare Disease Showcase
The Virtual Rare Disease Showcase was a three-day virtual conference which celebrated digital and technological rare disease innovations taking place around the UK and wider world.
Understanding advanced therapies
In this webinar series, you'll gain an understanding of genetics, advanced therapies and their application to rare diseases. Examine the challenges associated with accessing advanced therapies and explore success stories from across the rare disease space.
Understanding health economics: preparing your patient group for HTA
In this webinar, you'll learn the basics of health economics and the HTA process. Learn the HTA terminology and the role that patient groups can play in the HTA process.
Understanding the role of a genetic counsellor
Demystify the role of genetic counselors and explore the essential support they can provide to individuals and families affected by rare diseases. Genetic counselors are more than just medical professionals; they are crucial allies who offer not only medical insight but also emotional support and guidance.
Understanding the UK Rare Disease Framework
In this course, you'll learn the background to the new UK Rare Disease Framework that was released in January 2021. Explore the Framework's four priorities and five underpinning themes!
Utility values and QALY’s for health economic models
In this course, you'll learn how health economics is used in the health technology assessment process (HTA) to measure patients' quality of life and calculate the cost effectiveness of new treatments. Discover how utility values and QALY’s are used in health economics!
Webinar series | Empowering patient groups in research funding
In this webinar we explore the rare disease research funding landscape and how patient groups can make a real impact in applications.
What are rare diseases?
In this course, you'll learn what rare diseases are and how many rare conditions there are in the world. Gain examples of rare diseases and learn some of the most well-known rare conditions. See what rare diseases all have in common and more!
What does early access actually mean?
In this webinar, you'll gain an understanding of the basic principles of early access programmes, their value to industry and patients and the role that patient groups can play in ensuring their establishment and success.
What is a rare disease patient group?
Learn what rare disease patient groups are and their importance, not only for patients and families, but also as key collaborators with multiple stakeholders, like healthcare professionals, academics, researchers, regulators, funders or policymakers!
What is health economics?
In this course, you'll learn what ‘health economics’ means and why it is important. Discover how health economics informs decision making in healthcare and who the decision makers are in the UK and Ireland.
What patient groups need to know about Early Access Programmes (EAPs)
In this course, you'll gain the comprehensive information needed to make informed decisions about participating in and supporting early access programmes (EAPs). Enroll now to explore EAPs, especially if your group has a treatment on the horizon or one that's currently available and wish to access it.
Working from home
In this course, you'll learn how to establish good remote working environments and habits. Explore how to hold efficient virtual meetings and protect your mental health whist working from home.
Working with industry
In this course, you'll learn how patient groups and the pharmaceutical industry can work together for joint benefit. Explore how to identify the most appropriate pharma company to work with, how to establish contact with them and what regulatory guidance and compliance affects collaborating.