Rare Insights

Exploring the ideas, innovations, and individuals shaping the future of rare disease.

Making Patient Partnership a Reality in EU Joint Clinical Assessment (JCA)

Introduction: As the EU’s Joint Clinical Assessment (JCA) system rapidly evolves, patient involvement is no longer a[…]

Early Access Strategies to Boost EU Joint Clinical Assessment (JCA) Readiness

Early Access – A Strategic Edge for JCA Readiness As the EU Joint Clinical Assessment (JCA) framework[…]

Patient Engagement in the 110-Day EU Joint Clinical Assessment (JCA) Sprint

From 12 January 2028, every EU orphan-designated therapy must navigate a 110-day Joint Clinical Assessment (JCA) timeline[…]

Preparing for EU Joint Clinical Assessment: A Rare Disease Sponsor’s Guide

How Patient-Centric Approaches Can Drive Market Access and Reimbursement Success The European healthcare landscape is undergoing a[…]

Understanding Rare Disease Patient Symptom Search Behaviours Online

Research into human information search behaviour offers valuable insights into how patients and caregivers navigate the process[…]

Overcoming Patient Identification Challenges in Rare Disease Research

Rare disease identification is one of the most critical challenges in healthcare. For patients experiencing vague, overlapping[…]

Using Behavioural Models to Build Effective Digital Patient Engagement Strategies

In the age of patient-centric healthcare, deciphering human behaviours has emerged as a cornerstone for creating successful[…]

Uncovering the "why" behind behaviour to better engage with rare disease patients & their families.

Uncovering the “Why” Behind Behaviour to Engage Rare Disease Patients and Families

Living with a rare diagnosis brings with it a unique set of challenges. Research can be sparse,[…]

A Sponsor’s Guide to Navigating the EU Joint Clinical Assessment Framework

Prioritising Patient-Driven Outcomes for Rare Disease Biotechs The Joint Clinical Assessment (JCA) framework, established under the EU Health Technology[…]

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