Who we are

Following the Government’s decision to nationally commission services in England for the treatment and management of the ultra-orphan disease Paroxysmal Nocturnal Haemoglobinuria (PNH), the PNH alliance has been established to ensure PNH services continue to improve patient outcomes and to profile the issues surrounding PNH and other ultra orphan diseases.

PNH is an ultra-orphan, chronic, life threatening disease which causes red blood cells to lyse (explode). This can lead to a range of debilitating symptoms including severe fatigue, anaemia, abdominal pain, dysphagia (difficulty with swallowing), erectile dysfunction, kidney dysfunction and thrombosis. Patients are most commonly diagnosed in their 30s and median survival from diagnosis is in the range of 10-22 years.

This significant development in treatment will help provide a first class service for patients and the alliance is committed to the development of the service.

Members of the PNH alliance

• Professor Peter Hillmen
  Consultant Haematologist, St James University Hospital, Leeds
• Dr Dupe Elebute
  Consultant Haematologist, King’s College Hospital, London
• Louise Arnold
  PNH Clinical Nurse Specialist, St James University Hospital, Leeds
• Philip Hopkins
  Patient representative
• Ibrahim Momoh
  Clinical Nurse Specialist, King’s College Hospital Foundation NHS Trust

Secretariat

For more information on the PNH Alliance please contact the Secretariat:
Email: info@pnh-alliance.org.uk
Tel: 020 7222 5459

The PNH alliance has been established to ensure PNH services continue to improve patient outcomes and to profile the issues surrounding PNH and other ultra orphan diseases.