Beacon for rare diseases, a Cambridge-based charity, has just launched Rare Insights – a ground-breaking study exploring the value and impact of rare disease patient groups, alongside the challenges they face.

Patient groups are often the first port-of-call for newly diagnosed patients with a rare disease. By providing much-needed support to individuals with rare diseases and their families, they become a lifeline, frequently advocating for research and helping to shape policies that put patients at their heart.

Despite their vital work for those with rare diseases, the value of patient groups is often overlooked.

That’s where Rare Insights comes in.

Beacon wants to empower and sustain patient groups to help them keep doing what they do best: provide essential support for those with rare diseases and the people who care for them.

Beacon needs patient group experience as evidence!

In order to advocate for the support of patient groups, Beacon are gathering evidence of their vital impact on rare disease patients, research and policy, alongside the problems they face.

Get involved in Beacon’s new Rare Insights study by taking their patient group leader survey and spreading the word to rare patient groups you know. The deadline for submissions is 19th October- so make sure your voice is heard!

And they’ll put the results right back into the hands of patient groups.

Patient groups who are seeking funding, demonstrating impact or delivering services with limited resources will be able to use the findings from this study’s report to strengthen their call for support.

Find out more about the study over on Beacon’s website: https://www.rarebeacon.org/rare-insights-study/

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. The charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. They envision a world in which no one faces their rare journey alone.