Advice

Advice

We have specialist knowledge of rare conditions and offer expert advice in all aspects of rare diseases

We can advise and assist with constructive discussions with public health bodies, the planning and delivery of advisory boards, the collection of patient-reported outcomes or engaging patients with studies

Personalised advice

Discussions with stakeholders

We have a strong connection to individuals with rare disorders and we are able to advise you on how best to engage with this community to gather the data and insights you need. Our experienced team are also able to guide you through communications with public health bodies, such as NICE and NHS England.

Patient engagement

Working with rare disorders often means there are additional hurdles to consider, whether this is understanding how a limited patient population may affect your research, how to engage a patient group to avoid survey fatigue or how to maximise patient retention in your clinical trial through bespoke logistics. We have over a decade of experience to give you first-hand guidance to help you avoid these preventable pitfalls in your study. 

Advisory boards/ focus groups

We have an established relationship with opinion leaders and international patient groups of rare disorders and can advise on how to plan and deliver advisory boards and focus groups centred on any topic.

Data collection

We provide advice on how to design projects to collect patient-reported outcomes and Quality of Life data, including how to obtain licences and how best to communicate the findings to the wider community.

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