Patient Perspectives Podcast

Patient Perspectives Podcast

Posted On: 14/10/2021

The latest Patient Perspectives Podcast series from FIECON features Pompe Support Network Chair, Allan Muir, and patient Rowena Johnson, where they discuss the patient journey and potential future developments in Pompe Disease.

The Patient Perspectives Podcast is a series from FIECON where they talk to patient advocacy leaders, patients and thought experts on a particular disease to understand the burden of needs, the patient journey and potential future developments in an area. The focus is to amplify the understanding and disease areas which may not have the voice they need.

The Patient Perspective Podcast - LISTEN HERE

released a statement:

In our latest, Patient Perspectives podcast, we talk to Allan Muir, vice-chair of the International Pompe Association about his experiences as a carer for Pompe disease and as a patient advocacy leader. Alongside Allan, we have Rowena J who provides insight from the patient perspective, as she lives day-to-day with the disease.

Raising awareness within the medical community to ensure early diagnosis of Pompe disease is paramount to patient survival. Infant Pompe disease can be fatal without treatment, which must be administered very early, within the first month of life. In some cases, a child might only be diagnosed early enough because their sibling had died previously from the disease, preventable only through new-born screening.

Our hope is that a more comprehensive understanding of the patient perspective will help to optimise care, drug development and expenditures into the future.

We have a great great opportunity to share our learnings from our Patient Perspectives podcasts at the World Orphan Drug Congress in Barcelona next month. FIECON are hosting a panel, "Access for rare disease - how to navigate conflict, compromise and collaboration" on Tuesday 16th November at 16.40.
Come and join the discussion!