Dr Charles Steward, Patient Advocacy and Engagement Lead for Congenica, was interviewed by Effie Parks for her podcast, Once Upon a Gene, where Effie speaks to others about their journey through life with rare disease.

 

During the podcast entitled, Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward, Charles talks about being a father of two children with a rare disease, his experience as one of the first scientists to work on the human genome project and how he supported the original research analysis for human chromosome 10 as well as his recent election to the International Cerebral Palsy Genomics Consortium (ICPGC).

 

Charles also talked about his personal story, his life with a son and daughter that both have severe neurological disorders and the role of his wife as full-time care provider.

 

The discussion covers the power of genomics, Charles' passion for patient advocacy and how further sequencing of genomes and working together on an international basis will help to drive knowledge and deliver more answers for people with rare diseases and their families.

 

The podcast Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward is now available to listen to.

 

Patient Advocacy and Engagement at Congenica 

A desire to improve the lives of people living with rare and inherited diseases is central to everything we do at Congenica, and our patient advocacy and engagement initiative aims to ensure the patient voice is heard loud and clear inside the company. 

 

We also want to help patients navigate often confusing and disparate information by providing educational materials that are trustworthy and helpful. Our aim is to ensure patients, clinicians and researchers understand the patient journey from referral, through diagnosis and beyond.

 

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