Rare disease patient group training

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 importance and value cannot be ignored.

Unfortunately, only half of the known rare diseases have a support group. When a designated patient support group doesn’t exist for a condition, patients, parents or carers step up to the plate to establish one. These passionate and motivated individuals have little to no experience in the healthcare sector, but do have the desire to influence change for themselves and others.

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Establishing and running a rare disease support group can sadly be an overwhelming and lonely experience. Patient group leaders have the determination and hustle needed to bring about change, but don’t always have someone to turn to for advice, guidance or support along the way. These resourceful leaders are constantly learning new terminology, methods, regulations and strategies from scratch to achieve their mission. How to begin, who to contact and what to look for are often the first barriers faced when establishing a group. It is why patient groups need detailed trainings to help them form, grow and professionalise effectively.

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.

Rare disease patient group training

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 importance and value cannot be ignored.

Unfortunately, only half of the known rare diseases have a support group. When a designated patient support group doesn’t exist for a condition, patients, parents or carers step up to the plate to establish one. These passionate and motivated individuals have little to no experience in the healthcare sector, but do have the desire to influence change for themselves and others.

Read more

Establishing and running a rare disease support group can sadly be an overwhelming and lonely experience. Patient group leaders have the determination and hustle needed to bring about change, but don’t always have someone to turn to for advice, guidance or support along the way. These resourceful leaders are constantly learning new terminology, methods, regulations and strategies from scratch to achieve their mission. How to begin, who to contact and what to look for are often the first barriers faced when establishing a group. It is why patient groups need detailed trainings to help them form, grow and professionalise effectively.

At Beacon, we fully recognise the power and necessity of patient groups. We are the leading UK rare disease charitythat 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 trainings cover a wide range of topics, which our patient groups have identified as crucial to their journey and goals. Our free trainings help rare disease patient groups to:

 

  • Establish and develop a patient group
  • Raise awareness of their rare disease
  • Provide support to patients and families
  • Get research ready
When I first started working for our organisation, I had no experience in the charity world and very little knowledge. Beacon’s training has helped me immensely in building my confidence and taking our charity forward. Thank you!

By partaking in our trainings, patient groups can improve their skills in areas, such as:

View our training opportunities below and sign up to attend an upcoming Beacon event!

How we deliver our Empowerment Programme

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. It is why we deliver a variety of trainings that fit into your lifestyle. 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.

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.

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. It is why we created The Resources Hub, a 100% free e-learning platform that is full of exclusive content that guides patient groups through every stage of their rare disease journey.

The Hub brings together resources from across Beacon’s training programme to provide patient groups with one, central place to further their learning on topics of interest. The Hub’s catalogue of courses, guides and videos ensures that you can learn in a way that best suits you. 

Whether you’re an individual, a small group of volunteers or an established charity, our free support group training can help you to get started.

Discover what you could achieve today through the Hub’s training and development courses!

 

Our trainings cover a wide range of topics, which our patient groups have identified as crucial to their journey and goals. Our free trainings help rare disease patient groups to:

 

  • Establish and develop a patient group
  • Raise awareness of their rare disease
  • Provide support to patients and families
  • Get research ready
When I first started working for our organisation, I had no experience in the charity world and very little knowledge. Beacon’s training has helped me immensely in building my confidence and taking our charity forward. Thank you!

By partaking in our trainings, patient groups can improve their skills in areas, such as:

View our training opportunities below and sign up to attend an upcoming Beacon event!

How we deliver our Empowerment Programme

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. It is why we deliver a variety of trainings that fit into your lifestyle. 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.

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.

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. It is why we have built our 100% free e-learning platform, The Resources Hub, to provide on-demand patient group trainings that can be enjoyed whenever best suits your schedule.

The Resources Hub is home to Beacon trainings, videos, event recordings, written courses and guides. The Hub has been designed specifically for rare disease advocates and patient groups. It is there to help guide you through every stage of your rare journey. With plenty of courses and hours of content, The Hub will help you to be better informed and empowered to reach your advocacy goals.

Upcoming patient trainings for rare disease advocacy groups

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 our Community Mailing list now.

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

We are always happy to hear from you!