--- title: Helping to Further the Patient Impact of Genomics description: Dr Charles Steward was interviewed for podcast, Once Upon a Gene, where Effie speaks to others about their journey through life with rare disease. image: https://blog.congenica.com/hubfs/once%20upon%20a%20gene.png --- - [Our Customers and Partners](http://www.congenica.com/our-customers) - [Our Product Portfolio](http://www.congenica.com/congenica-products) - **Inherited Diseases** - [Rare Disease](http://www.congenica.com/congenica-rare-disease) - [Inherited Cancer](http://www.congenica.com/congenica-inherited-cancer) - [Prenatal Health](http://www.congenica.com/congenica-prenatal) - [Carrier Screening](http://www.congenica.com/congenica-carrier-screening) - [Neurodevelopmental Disorders](http://www.congenica.com/congenica-neuro) - **Somatic Oncology** - [Solid Tumours](http://www.congenica.com/congenica-oncology) - **Pathogen** - [Pathogen Surveillance](http://www.congenica.com/congenica-pathogen-surveillance) - [Our Services](http://www.congenica.com/congenica-services) - [Clinical Interpretation Services](http://www.congenica.com/congenica-clinical-interpretation-services) - [Professional Services](http://www.congenica.com/professional-services) - [Customer Support](http://www.congenica.com/customer-support) - [Pharma Services](http://www.congenica.com/pharma-services) - Resources - [Publications](http://www.congenica.com/publications) - [Supporting materials](http://www.congenica.com/resources) - [News](https://blog.congenica.com/) - [Events and webinars](http://www.congenica.com/events-webinars) - [About us](http://www.congenica.com) - [Leadership Team](http://www.congenica.com/leadership) - [Quality](http://www.congenica.com/quality) - [Investors](http://www.congenica.com/investors) - [People and Vacancies](http://www.congenica.com/people) - [Contact us](http://www.congenica.com/contact) Login ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) [Overview](https://blog.congenica.com) [Helping to Further the Patient Impact of Genomics](https://blog.congenica.com/helping-to-further-the-patient-impact-of-genomics) ![Helping to Further the Patient Impact of Genomics](https://blog.congenica.com/hubfs/once%20upon%20a%20gene.png) Blog Patient Advocacy epilepsy cerebral palsy # Helping to Further the Patient Impact of Genomics 6/4/2021    |    0 min read ## 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)](https://blog.congenica.com/dr-charles-steward-elected-to-the-international-cerebral-palsy-genome-consortium-governance-council-icpgc-gc).   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**](https://effieparks.com/podcast/episode-085-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.   ![Canva Design DAEgaTkdlXU](https://blog.congenica.com/hs-fs/hubfs/Canva%20images/Canva%20Design%20DAEgaTkdlXU.png?width=600&name=Canva%20Design%20DAEgaTkdlXU.png) ## Receive our rare disease patient advocacy updates If you, friends or family members are affected by rare diseases, are involved in supporting patients or just want to know more about rare diseases and patient engagement - sign up to receive our rare disease patient advocacy updates and help us raise awareness.   [![SIGN UP TO RECEIVE OUR FUTURE PATIENT ADVOCACY UPDATES](https://no-cache.hubspot.com/cta/default/6863388/466c0d7d-119f-437b-92ac-67e6fe12b7bd.png)](https://cta-redirect.hubspot.com/cta/redirect/6863388/466c0d7d-119f-437b-92ac-67e6fe12b7bd)     --- ### Related articles ![The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(8).png?width=320&height=192&name=Untitled%20design%20(8).png) 2/24/2023 #### [The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/the-road-to-diagnosis-how-genetics-transforms-the-lives-of-rare-disease-patients) In recognition of Rare Disease Day, Congenica looks at the importance of a genetic diagnosis for patients and asks, what's next for rare disease? ![What’s it like to be a woman working in science?](https://blog.congenica.com/hs-fs/hubfs/Since%202016%2c%20the%20number%20of%20women%20working%20in%20STEM%20fields%20in%20the%20UK%20has%20increased%20by%20216%2c552%2c%20taking%20the%20total%20number%20over%20the%201%20million%20mark%20for%20the%20first%20time.%20Women%20now%20make%20up%2024%25%20of%20the%20STEM%20workforce%20i%20(2).png?width=320&height=192&name=Since%202016%2c%20the%20number%20of%20women%20working%20in%20STEM%20fields%20in%20the%20UK%20has%20increased%20by%20216%2c552%2c%20taking%20the%20total%20number%20over%20the%201%20million%20mark%20for%20the%20first%20time.%20Women%20now%20make%20up%2024%25%20of%20the%20STEM%20workforce%20i%20(2).png) 2/10/2023 #### [What’s it like to be a woman working in science?](https://blog.congenica.com/whats-it-like-to-be-a-woman-working-in-science) For International Day of Women and Girls in Science, we talk to three women at Congenica about their experiences of working in STEM. ![Professor Matthew Hurles discusses the Deciphering Developmental Disorders study](https://blog.congenica.com/hs-fs/hubfs/Deciphering%20Developmental%20Disorders%20(1)-1.png?width=320&height=192&name=Deciphering%20Developmental%20Disorders%20(1)-1.png) 2/8/2023 #### [Professor Matthew Hurles discusses the Deciphering Developmental Disorders study](https://blog.congenica.com/professor-matthew-hurles-discusses-the-deciphering-developmental-disorders-study) Professor Matthew Hurles, project lead for DDD study and Congenica founder, discsuses his projects, advancements in data analysis and interpretation ##### Congenica is available as a CE Marked IVD clinical decision support platform for clinical diagnostic use for inherited genetic disorders in the UK and EU, Iceland, Lichtenstein, Norway, Switzerland and Turkey. 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