Rare disease patient group training

Our trainings help patient groups to form, grow and professionalise.

Patient groups are essential to the rare disease community. These groups not only support those living with a rare condition, but also actively advocate for better research, treatment and care for their community.

Rare disease patient groups are one of the few outlets that can be turned to for credible information, understanding and support. Their important and value cannot be ignored. 

Photo of a man holding a sign which reads patient groups matter because they understand the needs of their community

What we do

At Beacon, we fully recognise the power and necessity of patient groups. We are the leading UK rare disease charity that offers patient groups the free trainings they need to reach their advocacy goals.

We upskill patient groups to help them gain the knowledge and confidence needed to advocate on behalf of their community. Our patient group trainings give rare advocacy groups the tools and connections needed to recognise their own power and potential.

We believe that patient groups simply need a helping hand and a trusted guide to walk their journey beside them, as they change the future of their rare disease.

Our free trainings help patient groups to:

  • Establish and develop a patient group
  • Raise awareness and understanding of their rare disease
  • Provide support to patients and families
  • Get ready to participate in research

You can improve your skills in many areas, such as:

How we deliver our patient group training

Our patient group trainings are delivered in a way that best suits your needs. They are free to attend and cater for your learning style.

We know that leaders often have to juggle caring responsibilities, personal health, family life, employment and other roles. Whether you enjoy attending webinars from home, taking online training courses over the weekend or getting dressed up to attend an in-person workshop, we have the perfect patient group training for you!

In-person patient group trainings

Our in-person trainings provide practical, hands-on guidance from experts and patient groups alike. In-person trainings offer attendees the chance to network with each other and form connections with stakeholders who they otherwise wouldn’t have met.

These trainings connect patient groups at every stage of their journey with each other to ensure that they can get the answers they need to achieve their mission. We believe that by fostering an environment where patient groups can learn from each other in an open, welcoming setting, groups will save time, money and resources.

Our in-person trainings create a tight-knit feeling by sparking engagement through group activities that bring the room and community together.

Beacon flame logo
Beacon flame logo

Virtual patient group trainings

Don’t have the time to attend an in-person event? We get it! If you have too much on your plate or simply live outside of the UK and can’t attend, we’ll bring the training you’d like straight to your door!

Our virtual patient group trainings provide a top-class remote learning experience, allowing everyone to attend regardless of location or circumstances. Each training gives practical advice to help patient support groups build their own network, improve their support offerings and drive research into their specific rare condition. Our virtual trainings foster engagement and ensure that everyone feels connected and heard.

Guided programmes

If you’re ready to take your advocacy skills to the next level, apply for one of our guided programmes!

Our guided programmes provide tailored support to help rare disease advocacy groups and their leaders reach new specific milestones; both professionally and personally. Patient groups are never too big or too small to apply for them. All you need is a clear idea of what you want to achieve, the motivation to make it happen and the time to put your ideas into action! When you enrol in one of our guided programmes, you’ll leave with enhanced connections, confidence and knowledge.

Beacon flame logo
Beacon flame logo

On-demand patient group trainings

Patient group leaders are constantly juggling work, health and care commitments on top of running a rare disease support group. Free time is practically a myth, which can make attending events near impossible regardless of their delivery method. We understand and hear your challenges.

This is why our e-learning resources provide on-demand patient group trainings that can be enjoyed whenever best suits your schedule. 

The Resources Hub is home to Beacon’s trainings, videos, event recordings, written courses and guides designed specifically for rare disease advocates and patient groups. 

Upcoming training

Join us and the rare disease community at an upcoming Beacon event! Sign up to attend what interests you most and come join our growing, global rare disease community.

To be amongst the first to hear about our upcoming patient group trainings or recruitment calls for our guided programmes, subscribe to The Beacon Bulletin now.

If you’d like to learn more about our upcoming patient group trainings or have ideas for future trainings, please email our Projects Team on projects@rarebeacon.org