14 Jan 2021
Leading advocacy professionals to ensure patient remains central to Congenica’s approach
Congenica, the digital health company enabling rapid and accurate analysis of complex genomic data to transform people’s lives, today announces the launch of a Patient Advocacy and Engagement Advisory Board. Working with the Congenica Board of Directors and wider senior leadership team, this group of leading advocacy professionals and experts in rare diseases, genetics and precision medicine will ensure that the patient perspective remains at the heart of Congenica’s strategy. Alongside this, the new board will serve to inform patients and clinicians on the role of clinical genomics in the diagnostic journey.
Congenica’s digital technology enables the rapid analysis and interpretation of genomic data on a massive scale, performing multiple analyses on a patient’s DNA once it has been sampled and sequenced, searching for patterns, identifying anomalies, comparing it with reference genomes and previously identified disease-causing genes. Importantly, the technology interprets the vast amounts of data to provide actionable information that can help clinicians to make quicker diagnoses and treatment choices, guided by genomic evidence. Using its ground-breaking technology Congenica aims to reduce the diagnostic odyssey for rare disease patients by making genomic analysis routine and accessible.
Receiving an early diagnosis can provide considerable benefits for patients and their families. Not having answers to questions can be a source of great anxiety and a swift diagnosis offers the opportunity for patients and their families to access the support they need to make informed choices about their future, sooner.
The Patient Advocacy and Engagement Advisory Board will be led by Alastair Kent OBE FRSA, a world renowned advocacy professional with more than 25 years of experience in rare and genetic diseases. Alastair was the first Executive Director of Genetic Alliance UK, an alliance of over 200 patient organisations, supporting those affected by genetic conditions. He works regularly with healthcare bodies, pharmaceutical companies and medical research organisations, ensuring that the voices of patients are incorporated at all levels.
With representation in Europe and the US, the board comprises experts in rare diseases, genetics and precision medicine, some of whom have personal experience with rare diseases. Working with Congenica, the board will help to inform on the Company’s product to ensure that it is serving the patient as intended. For the vast majority of patients, and for many non-specialist doctors too, the route to a diagnosis is a closed book. As such the board will support an engagement and education programme on the role of clinical genomics throughout the diagnostic journey.
One of the first actions of Congenica’s Patient Advocacy and Engagement Advisory Board has been to align with the International Rare Disease Research Consortium (IRDiRC). Congenica recently joined the IRDiRC Assembly and Committee to support the consortium’s vision of enabling all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention.
Alastair Kent OBE FRSA, Chair of the Patient Advocacy and Engagement Advisory Board, commented:
“For a patient with a rare disease the diagnostic journey can be highly daunting. The formation of this patient-focussed advocacy board will ensure that rare disease patients and their clinicians can be kept informed about the role of clinical genomics and how it can help them, and I am honoured to take the role of Chair. I look forward to working with the Congenica team and with the patient groups as we enhance the dialogue of genomic medicine within the rare disease community.”
Charles Steward PhD, Patient Advocacy and Engagement Lead at Congenica, said:
“Congenica’s overarching goal is to provide life-changing answers for patients and their families. By establishing this new board we can ensure that the patient voice is heard and that it remains central to everything that Congenica does as we develop innovative new technologies and take new products to market.”
- Alastair Kent OBE FRSA, Chair of the board, former Executive Director of Genetic Alliance UK
- Dr. Cor Oosterwijk, Executive Director of VSOP, the Dutch Genetic Alliance
- Nicola Bedlington, Special advisor to and former Secretary General of the European Patients’ Forum
- Lynsey Chediak, Project Lead at World Economic Forum, working on rare disease health projects and precision health.
- Luke Rosen, Founder of KIF1A.org, a non-profit organisation working to discover treatment for KIF1A Associated Neurological Disorder.
- Malisa Rust, Associate Director of Patient Engagement at PTC Therapeutics