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HRW RareFocus combines specialist rare disease expertise and recruitment, tailored methodologies and thoughtful analysis to help navigate complexity, uncover deeper insight and translate understanding into action.
Rare disease market research is about elevating voices that are often underrepresented, then translating complex lived and clinical experiences into clear decisions for strategy, launch planning and communications.
The challenge is not simply recruitment. It is knowing who to include, how to engage them sensitively, how to maximise every interaction and how to interpret insight when sample sizes are smaller and experiences are highly varied.
This matters because rare disease brands often operate in environments with limited precedent, evolving treatment pathways and high-stakes decision making. Success depends on understanding the full ecosystem surrounding the patient, reaching communities that are often difficult to access, and translating limited but meaningful evidence into actionable insights.
The work of our specialist rare disease team, HRW RareFocus, is underpinned by integrated working with HRW’s expert Market Research teams in quant and qual, Behavioural Science, Data Science, and Patient Research. Our approach is built around three connected principles:
Disease focus
We adapt every design to the specific condition, recognising that each rare disease has its own variability, diagnostic pathway, treatment context and patient reality.
Ecosystem focus
We look beyond the patient alone, incorporating HCPs, caregivers, patient associations, KOLs, payers and healthcare system context where relevant.
Design focus
We design thoughtful, flexible research that reduces respondent burden, maximises engagement and extracts richer insight from every conversation.
Research design across the product lifecycle
-Behavioural science through HRW Shift, identifying biases, heuristics and behavioural drivers to help understand what is influencing stakeholders across the ecosystem -Advanced analytics and data science support for smaller and more complex datasets -Insight activation through HRW Studio, including journey maps, infographics, videos, immersion tools and stakeholder workshops
Ultimately helping you move beyond what people say to understand how rare diseases are experienced in the real world.
Case-studies
In preparation for the launch of our client’s treatment within oHCM, there was a need to grow understanding of the oHCM treatment landscape and awareness, usage and perceptions of the first-in-class CMI.
To ensure the launch was competitive, there was also a need to find factors that differentiated our client’s product from other CMIs to feed into positioning and communication strategies and establish their treatment as a go-to in oHCM.
The client’s novel product in an orphan disease was launched in a competitive and evolving treatment landscape. Insights were needed to support strategic planning as well as inform tactical focus areas, with objectives including:
The research approach was structured to ensure recruitment of the right respondents and to support the collection of robust and reliable data:
Jess Woodhead
Yasmeen Elsakary
Rachel Schooler
Faye Holmes
Isabella Sheridan
Amy Russell
Blaine Siegel
A passion for elevating the voice of the patient including specific interest in rare immunology, dermatology and endocrine conditions.
Experience spanning congenital and oncologic rare diseases, with a strong interest in amplifying patient, HCP, and caregiver perspectives.
Longstanding commitment to paediatric rare disease, with a particular interest in caregiver experiences and diagnostic pathways.
Expertise spanning rare haematology, respiratory and sleep disorders, with a focus on uncovering the needs and experiences of all involved.
Combining expertise across neurological and metabolic rare diseases to uncover patterns shaping patient journeys across global healthcare systems.
Extensive knowledge of conducting successful fieldwork in the rare disease universe. For both HCPs, patients and CGs, particularly within the quant space.
Committed to recruiting individuals living with rare diseases, while providing a platform for both patients and the providers who support them.
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