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Championing people-powered communications in rare diseases: AMICULUM’s feature in The Guardian Rare Diseases Campaign 2024

September 26, 2024 | HCPs, patient perspective, people-powered communications, rare disease advocates, rare diseases 

By Ellie Thomas

- PMLiVE

AMICULUM is delighted to have contributed to the MediaplanetUK Rare Diseases Campaign 2024, published in The Guardian on Tuesday 17 September. The campaign aims to raise public awareness about rare diseases, from dismantling stigmas and enhancing understanding to encouraging individuals to seek help if they think they have a rare disease.

The full campaign can be accessed online, with printed copies available at the Cambridge Rare Disease Showcase on 2 October 2024 and the World Orphan Drug Congress in Barcelona from 22 to 25 October 2024.

Our rare diseases lead, Ellie Thomas, authored an insightful article titled “Ways to champion people-powered communications in rare diseases,” which is featured in the piece.

Ellie commented: “I’m really pleased to be part of this important campaign. It’s critical we shine a light on the power of personal stories and meaningful connections within the rare disease community. It’s not just about sharing facts and statistics; more important is facilitating impactful, insight-driven communications that ensure those living with these conditions are heard, understood, and supported. By fostering dialogue between all stakeholders, we can drive real progress and improve outcomes.” Read on to explore the full article.

Ways to champion people-powered communications in rare diseases

The diversity of the >6000 rare diseases characterized to date1 and the limited number of patients living with each of these contributes to a paucity of evidence to guide effective care. What must we do differently to create meaningful communications for people living with rare conditions and those involved in their care?

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.

Personalized 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 specialty plays a unique role in the healthcare journey, supporting the need for specialty-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 recognizing 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 in the people at the heart of this complex area of medicine, we can overcome its challenges. At AMICULUM, we are passionate about engaging with the rare disease community to deliver meaningful communications that drive real progress for those living with rare conditions.

To learn more, get in touch with Ellie Thomas at (ellie.thomas@amiculum.biz). For more insights, visit the AMICULUM News and Insights page.

References

  1. Nguengang Wakap S et al. Eur J Hum Genet 2020;28:165–73.
  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).

This content was provided by Amiculum

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