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Added fear of mortality for rare caregivers
Patient Advocacy

Added fear of mortality for rare caregivers

1/18/2022    |    0 min read

Being a parent to a rare child is hard enough day to day, let alone planning for the future. What happens when a parent is diagnosed with a potentially life-threatening disorder? What goes through our minds then?


This is the topic that Luke Rosen, a member of Congenica’s Patient Advocacy and Engagement Advisory Board, recently spoke about in podcast 'Once upon a Gene'. Interviewed by Effie Parks, Luke reveals his recent medical difficulties and opens the raw dialogue around what happens when a caregiver dies.


Dr Charles Steward, Patient Advocacy and Engagement Lead for Congenica and dad of two children with rare diseases, said:

"Rare disease families often face challenges beyond the constellation of difficulties associated with caring for a medically complex child. The constant fear of mortality - not being around to care for their rare child or to fight for a cure is ever-present. We all think about it, and we need to talk about it: what happens if a rare caregiver dies? I am so pleased to be able to share this conversation between Effie and Luke about cancer, fear and community."



Luke is founder and Board Chair of KIF1A.ORG, inc, which he and his wife started following their daughter Susannah’s diagnosis of a rare neurological disease caused by a mutation in her KIF1A gene. 


Listen to Luke's podcast


Dr Charles Steward has also made a guest appearance on the Once upon a Gene podcast.

In his podcast with Effie, Charles talks from his triple his perspective as a father of children with rare diseases, a genome scientist, and his role at Congenica as lead for patient advocacy and engagement.    

once upon a gene


Hear Charles' story


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