Information for the public

Danicopan (Voydeya) with ravulizumab or eculizumab is available on the NHS. It is a possible treatment for paroxysmal nocturnal haemoglobinuria in adults who:

  • still have haemolytic anaemia (anaemia caused by red blood cells being destroyed faster than they can be produced) while using a complement component 5 inhibitor (C5 inhibitor) and
  • have clinically significant extravascular haemolysis (red blood cells being destroyed outside of blood vessels).

Ravulizumab and eculizumab are C5 inhibitors.

Is this treatment right for me?

Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns. Your family can be involved too, if you wish. See our webpage on making decisions about your care.

Questions to think about

  • How well does it work compared with other treatments?
  • What are the risks or side effects? How likely are they?
  • How will the treatment affect my day-to-day life?
  • What happens if the treatment does not work?
  • What happens if I do not want to have treatment? Are there other treatments available?

Information and support

PNH Support (contact@pnhuk.org) can give you advice and support.

You can also get support from your local Healthwatch.

NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.

ISBN: 978-1-4731-6125-411

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