What are patient advocacy groups? | Rare disease patient groups (2024)

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.

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.

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!