A parent’s view on the care of their baby with Pierre Robin Sequence

A patient’s perspective on rare disease care. From “Seminars in Fetal & Neonatal Medicine”.

Feedback from physicians:

Thanks, Philippe – this is tremendous and it emphasises the need or should I say absolute imperative that we obtain and heed the patient / parent perspective in the approach to rare diseases. This certainly provides aspects that we do not read about in the textbooks.

– Prof. Dr. Peter A. Mossey