Parliamentary Round Table Discussion for the National PNH Service

Dr Griffin, Dr Kelly, Dr Lowndes, Louise Arnold, Nicola Houghton and patient support groups attended Parliament on 24th April 2024 for a round table rare diseases discussion chaired by Mr O’Dowd.  Baroness Pauline Neville-Jones from the House of Lords was also in attendance.

The discussion was surrounding the service’s unique approach to a rare disease national service, outreach clinics and the role of clinical leadership in facilitating new ways of coordinating care.