Alpharmaxim full lockup logo

Disease education

Challenges in rare diseases:

Misdiagnosis and missed diagnosis

It can take years to get the right diagnosis:

  • Frequent misdiagnosis with more common/likely diseases
  • Low awareness of possible rare diseases
  • Lack of knowledge of any symptom clusters
  • Devastating impact on the patient and their family

40% of patients are misdiagnosed1

Patient identification

Lack of common approach to patient identification:

  • Lack of clarity around what to look for
  • No standardisation of symptom clusters as different patients with the same disease may present with different symptoms
  • Inadequate estimates of the burden of rare diseases

25% of patients wait 5–30 years before receiving confirmatory diagnosis1

Patient care pathway

Uncertainty for healthcare professionals and patients after diagnosis:

  • Limited support networks
  • Unclear referral pathways
  • Lack of guidance on how best to support patients and other family members who might be affected after diagnosis

80% of rare diseases have genetic origins2

1. EURORDIS. Survey of the delay in diagnosis for 8 rare diseases in Europe (‘EurordisCare 2’). 2007. https://www.eurordis.org/sites/default/files/publications/Fact_Sheet_Eurordiscare2.pdf. Accessed 3 February 2020;
2. EURORDIS. What is a rare disease? 2007. https://www.eurordis.org/sites/default/files/publications/Fact_Sheet_RD.pdf. Accessed 3 February 2020

Talk to us about how we can transform your communications

World Alzheimer's Month 2023

World Alzheimer's Month 2023

In recognition of World Alzheimer’s Month, we created an animation to explore just one of the ways in which Alzheimer’s disease affects patients and their…
Understanding vaccine hesitancy through the lens of behavioural science

Understanding vaccine hesitancy through the lens of behavioural science

In this latest animation, we explore how a behavioural science-driven approach can help us to better understand the reasons behind vaccine hesitancy.
World Parkinson's Day 2023

World Parkinson's Day 2023

For World Parkinson’s Day 2023, Alpharmaxim created an animation to highlight some of the Parkinson's symptoms to look out for – in yourself and others.