Creld1 Warriors: Arming Parents with the Support They Need

Abstract

Adam Clatworthy, a communications professional at a technology firm, 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.

Keywords::

• atrioventricular septal defect
• CRELD1
• epilepsy
• intractable seizures
• rare disease

Financial disclosure

The author has no financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Competing interests disclosure

The author has no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Writing disclosure

No writing assistance was utilized in the production of this manuscript.

Interview disclosure

The opinions expressed in this interview are those of Adam Clatworthy and do not necessarily reflect the views of Future Medicine Ltd.