The Rare Insights Study
Beacon is excited to launch Rare Insights – a ground-breaking study exploring the value and impact of patient groups.
Introducing Rare Insights
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.
We’re here to change that.
Through surveys, focus groups and interviews, we will listen to the voices and experiences of patient groups.
These insights will help us create a report with recommendations for funders, policymakers, industry and the wider rare disease community to enhance recognition, support and resources for patient groups.
We want 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.
Why Rare Insights matters
Rare diseases sit right at the heart of genomic medicine, UK life sciences, clinical trials, and care coordination.
Patient groups act as vital connectors across these areas.
To realise the full potential of rare disease care and research, patient groups must be recognised, supported, and sustainably resourced.
In order to advocate for the support of patient groups, we need evidence of their vital impact on rare disease patients, research and policy.
That’s where you come in.
Get involved
Take part in our patient group survey to provide the evidence needed to advocate for better support for patient groups.
With the UK Rare Diseases Framework extended to Autumn 2026, this study will deliver recommendations at the perfect time to enhance patient groups’ recognition, support and resources.
We greatly appreciate your time and energy in helping shape our work. Anyone who completes our survey will have the opportunity to win one of our three prize draws – a £75, £50 or £25 voucher or donation to a charity of your choice.
Survey disclaimer
Your responses will be treated as confidential and stored securely. Please note that Beacon will be the organisation responsible for managing your data (the data controller), while Costello Medical will handle your data on Beacon’s behalf (the data processor).
Survey responses will be collected using Google Forms, and access to the raw survey data (including any identifying information you provide) will be restricted to authorised members of the Beacon and Costello Medical project team.
We are collecting this information, with your consent, to understand the needs, challenges and sustainability of rare disease patient advocacy groups and to produce an evidence-based report. Findings may be shared with relevant stakeholders, including policymakers and other third parties, but only in aggregated and/or de-identified form.
For analysis purposes, responses will be downloaded and stored securely on Costello Medical’s internal servers. Beacon may also store the project data on its own systems and on Monday.com (its project management platform) for the purpose of managing this project.
You may withdraw your consent for your feedback and responses to be used for the purposes outlined from now until your data has been aggregated and can no longer be linked to you. If you wish to withdraw your consent prior to response aggregation and de-identification, your survey responses will be deleted and will not be included in any further summaries or reports.
To withdraw your consent, please email Elizabeth Proctor via elizabeth@rarebeacon.org.
Beacon will retain survey data only as long as necessary to support this project and any related follow-up actions. After this period, the data will be securely deleted or archived in line with Beacon’s data retention policies.
Data will be handled in accordance with applicable data protection legislation and Beacon’s privacy policy.
Putting the results back into your hands
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.
We need you!
This is to ensure our study captures the lived experiences of individuals from a wide range of perspectives and backgrounds.
While our survey is most suitable for patient group leaders, we encourage anyone representing a patient group to complete it and contribute to our recommendations.
How will we use the results to inform our own strategy?
Beacon will use these results to shape our future strategy and programmes to ensure our support remains relevant, effective, and responsive to the evolving needs of patient groups and the wider rare community.
As a trusted organisation placed at the heart of the rare disease community, our work helps patient groups support thousands of patients across the country.
We will use the evidence gathered from the study to demonstrate to our funders what patient groups need the most from us.
We want to maintain the longevity of patient groups, and the Rare Insights Study is here to back us in that.
Thank you to our funders!
Our sponsors and supporters have provided financial support for this study. This study has been organised by Beacon and neither our sponsors nor supporters have determined the content or organisation. All funds received by pharmaceutical companies have been used in accordance with the ABPI code.
Thank you to our pro bono partner
