Browse by subject
Whether you want to learn more about fundraising and communications or research and drug development, we have the resources for you.
Simply browse by subject to find free online resources in your area of interest and get started! You don’t have to complete the course in one sitting. You can come and go as you please, and view how far you have gotten with the convenient progress bar.
Don’t know where to begin? Explore our new and updated e-learning modules!
The Resources Hub is managed and maintained by the rare disease charity, Beacon for Rare Diseases.
New and updated resources
Access and reimbursement
Understand how patient access to new treatments is obtained, including why access matters and when access considerations should start for patient groups.
Collaborating with medical professionals
Learn how you can work with HCP's to build sustainable collaborations and help your patient community.
Drug Repurposing
This course explores the benefits and challenges associated with drug repurposing, and the important considerations when setting up and coordinating a drug repurposing project.
Browse by subject
Building connections
Communications
Data
Drug repurposing
Fundraising
Patient group development
Research and drug development
Supporting community
Building connections and collaborations
Collaborating with medical professionals
Learn how you can work with HCP's to build sustainable collaborations and help your patient community.
Maximising engagement with HCPs
Tune into this webinar to explore the practical things patient groups can do to make sure they are engaging with HCP’s in the most beneficial way.
Patient group and charity collaborations
Learn how collaborations between patient groups can help your patients and help to grow the rare community.
Communications
Ensuring inclusive communication around genetics
In this webinar we highlight the role of genetics as a tool to accessing diagnoses and understanding of rare conditions, and a barrier to understanding and discussing these diseases and their inheritance.
Growing your patient community by identifying patients and groups online
In this webinar we explore opportunities for signposting to your organisation online. The webinar covers rare disease databases, online forums and membership lists, before looking at how you can strategically search for more opportunities which are specific to your rare disease.
Health Literacy explained
In this webinar, we offer rare disease patient organisations a comprehensive introduction to health literacy and aim to help you understand the process involved in developing and writing information with health literacy in mind.
Data
Building a rare disease registry
Understand what patient registries are, the steps involved in creating them and the impact they can have.
Building an international patient registry
In this webinar, hosted in collaboration with Pulse Infoframe, we explore the benefits, challenges, key considerations, rules and regulations of running an international patient registry
Building your patient group data to drive research
In this webinar, hosted in collaboration with Aparito and Pulse Infoframe, we explore how patient groups can utilize technologies and opportunities to put patient datasets at the forefront of cutting edge research
Drug Repurposing
Drug Repurposing
This course explores the benefits and challenges associated with drug repurposing, and the important considerations when setting up and coordinating a drug repurposing project.
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, hosted in collaboration with Healx, we provide a comprehensive introduction to drug repurposing and aim to help you understand the process involved in repurposing drugs and what benefits this can bring.
Fundraising
Formalising your patient group as a charity: Understanding charity registration
Navigating the Cost of Living Crisis: Building resilience
In this webinar, learn tips on how to build your organisation's resilience and strategy in the face of challenging financial times.
Navigating the Cost of Living Crisis: Understanding the funding landscape
In this webinar, learn tips on how to navigate the cost of living crisis and useful advice for challenging economic times including how to work with funders and how to minimise your tech and operational costs.
Patient group development
Employing staff to drive your patient group towards its goals
In this webinar, learn how to know when your group is ready for paid staff, what you need in place before you can hire someone and how to attract the right people for your organisation.
Formalising your patient group as a charity: Understanding charity registration
Growing your patient community by identifying patients and groups online
In this webinar we explore opportunities for signposting to your organisation online. The webinar covers rare disease databases, online forums and membership lists, before looking at how you can strategically search for more opportunities which are specific to your rare disease.
Research and drug development
Building your patient group data to drive research
In this webinar, hosted in collaboration with Aparito and Pulse Infoframe, we explore how patient groups can utilize technologies and opportunities to put patient datasets at the forefront of cutting edge research
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, hosted in collaboration with Healx, we provide a comprehensive introduction to drug repurposing and aim to help you understand the process involved in repurposing drugs and what benefits this can bring.
Supporting your community
Growing your patient community by identifying patients and groups online
In this webinar we explore opportunities for signposting to your organisation online. The webinar covers rare disease databases, online forums and membership lists, before looking at how you can strategically search for more opportunities which are specific to your rare disease.
What are rare diseases?
Learn what rare diseases are and how many rare conditions there are in the world.
Working from home
Learn how to establish good remote working environments, habits and how to hold efficient virtual meetings.