Ellie Thomas
Rare Diseases Lead, AMICULUM
With over 6,000 unique rare diseases1 and limited patient populations, evidence to guide effective care is scarce. How can we create meaningful communications for people living with rare conditions and the wider community?
Rare diseases pose unique challenges for traditional communication. Real-world insights, global collaboration and personalised engagement can help address these issues.
Listen to lived experiences
Tell the personal stories of those living with rare diseases. These narratives can provide unique insights that help identify patterns in rare diseases that may not be evident from the limited clinical data available. As real-world experiences become increasingly important in healthcare, patient stories are crucial for conveying a deeper understanding in our communications.
Enhancing connectivity
Facilitate opportunities to share insights between stakeholders. Educational gaps and low awareness of rare diseases pose another significant challenge. The rarity of these conditions often leaves patients feeling isolated, with few opportunities to exchange experiences and gather support from others.
Locating healthcare professionals (HCPs) with expertise in a specific rare disease is also challenging, as reflected in the average time to a correct diagnosis (5–7 years).2 The digital age presents the perfect opportunity to connect patients to patients, HCPs to HCPs and patients to HCPs. We must leverage this connectivity in our communications and provide the right channels to support global collaboration.
By focusing on the people at the heart of this complex
area of medicine, we can overcome its challenges.
Personalised engagement
Provide tailored education. Rare diseases often necessitate care from various HCPs due to their complex and multifaceted nature. A one-size-fits-all approach to education fails because each speciality plays a unique role in the healthcare journey, supporting the need for speciality-specific information.
For instance, it is unrealistic to expect a general practitioner (GP) to provide a definitive diagnosis during an initial visit. However, GPs do need practical guidance on recognising red flag symptoms that could raise suspicion of a rare disease, so they can successfully refer patients to specialists. Patients also require tailored education that can empower them to take control of their condition, presented in a clear, accessible manner without excessive jargon.
People, not statistics
By focusing on the people at the heart of this complex area of medicine, we can overcome its challenges. At AMICULUM (a healthcare communications agency with specialist expertise in rare diseases), we are passionate about engaging with the rare disease community to deliver meaningful communications that drive real progress for those living with rare conditions.
[1] Nguengang Wakap S et al. Eur J Hum Genet 2020;28:165–173.
[2] Rare Disease Impact Report: Insights from patients and the medical community. Available at: https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf (accessed August 2024).
