Beacon for Rare Diseases has launched Rare Insights – a ground-breaking study exploring the value and impact of rare disease patient groups, alongside the challenges they face.
We need your experience as evidence!
Get involved in Beacon’s new Rare Insights Study by taking their patient group leader survey.
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.
That’s where you come in.
Take the patient group leader survey to contribute to their report of recommendations for funders, policymakers, industry and the wider rare disease community to enhance recognition, support and resources for patient groups.
And they’ll put the results right 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.
Find out more about the study over on Beacon’s website (link).
Respond before 19th October to make your voice heard.