We welcome the return of guest blogger Adam Clatworthy, who talks about the importance of parents and patients - who are experts in the complex conditions and symptoms of rare diseases that they live with - working together with clinicians to help deliver diagnoses.
How do we ensure that parents have a voice in their child’s care?
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.
We strive to help ensure all parties understand the strengths and current limitations of genomic medicine as well as ensuring we work together to realize the full benefits that the genomic revolution promises.
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