Why patient groups matter

Patient advocacy groups provide the understanding, support and medical information needed to make informed decisions about one’s health and treatment options.

What are patient advocacy groups?

Patient advocacy groups are organisations that are set up to represent and support patients and their families living with a specific condition. They are one of the few outlets that can be turned to for credible information, understanding and support.

Patient support groups advocate for their community by hosting family conferences, leading research projects, launching awareness campaigns and recommending treatment for approval to regulatory bodies.

Patient groups range in structure and size. No two groups are alike. Some support groups exist as open or closed Facebook groups. Other patient organisations are small and run by volunteers. Patient advocacy groups can also be volunteer-led charities or large-scale, professional charitable organisations.

Regardless of their structure or size, these groups are breaking the isolation felt by patients and their families. Their importance and value cannot be ignored.

Woman holding a sign which reads patient groups matter because only they know what questions are important

Why are patient advocacy groups important?

Patient groups are a lifeline for rare disease patients and their families. When a rare diagnosis is made, patients and their families are simply handed a one-page Google printout of the condition and told to go home. The alarming lack of knowledge, support and understanding from the healthcare sector propels these individuals and families into isolation with more questions than answers.

Rare disease patient groups are there to pick up the pieces when the wider society and healthcare profession let these individuals and families down. It is patient groups who provide the emotional support after a rare diagnosis and help their members live with and manage their rare condition.

Patient advocacy groups provide the understanding, support and medical information needed to make informed decisions about one’s health and treatment options. Without rare disease patient groups, rare patients and their families would be left overwhelmed, isolated and misunderstood.

The challenge rare disease patient groups face

Only half of the known rare diseases have a patient support group. When a patient group doesn’t exist for a rare condition, it falls to patients, parents or carers to establish one. These determined individuals have little to no experience in the healthcare or charity sector. They simply have the desire to influence change for those facing the same challenges as them.

Establishing and running a rare disease support group can be overwhelming and lonely. Patient group leaders do not have someone to turn to for advice, guidance or support along the way. These groups are constantly learning new terminology, methods, regulations and strategies from scratch to achieve their mission. It is why rare disease patient groups need detailed trainings to help them form, grow and professionalise.


This is where we come in!

How we’re harnessing the power and potential of rare disease patient groups

It has long been apparent that to work in rare diseases you need to work with the experts – patients and patient groups. Patient organisations are not a “nice to have.” They are vital to the rare community.

These groups support their members and advocate on behalf of them for better research, care and treatment. Companies are truly “patient-first” when they work with patient groups to deliver tailored services and treatments for rare patients. It’s time that the rare community recognised the power and potential of patient groups.

Patient organisations must be involved early and often in health, science and treatment discussions. It’s time that patient groups recognised their own power and potential.

Our team fully recognises the power and necessity of patient groups. It is why we work tirelessly to upskill these passionate individuals, so they can advocate for their community to the best of their ability.

Photo of a woman holding a sign which reads patient groups matter because shared experiences and shared thinking equals bigger impact


Beacon is the leading UK rare disease charity that offers free trainings to patient groups to help them reach their specific advocacy goals.

Beacon is breaking the isolation experienced by patients and their families by giving rare disease patient groups the tools, confidence and connections needed to transform the rare patient experience. By helping patient groups to grow in confidence, skill and knowledge, we are helping more groups to form, grow and professionalise.

Our patient group trainings and events encourage rare disease support groups to work together to accelerate change for their families and the wider rare community.

Patient groups may support one specific rare disease, but the challenges these groups face when advocating for their community are remarkably similar. By collaborating on projects and initiatives, rare disease advocacy groups can pool resources to avoid reinventing the wheel.

Whether you would like help with starting a patient group, developing a research project, accessing treatment or improving your support offerings, we are the rare disease charity you can turn to for expert advice and guidance. Our team listens to your needs and delivers the patient group trainings needed to meet them. We’ll walk your rare journey alongside you and support you the entire way. We’re your beacon of hope and light!