Centers of clinical expertise
Centers of clinical expertise
Paraxysmal nocturnal hemoglobinuria (PNH)
About center of expertise
Radboudumc's center of expertise in PNH has and maintains knowledge in the field of diagnosis, complications, and treatment of the rare and severe disease PNH. The center has a national function and cooperates with other hospitals. read moreAbout the Radboudumc center of expertise
The center Paroxysmal nocturnal hemoglobinuria (PNH) focuses on the rare blood disease PNH, which causes a chronic breakdown of red blood cells (hemolysis) produced by stem cells in bone marrow. read moreAbout the Radboudumc center of expertise
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disease. Stem cells in your bone marrow produce blood cells. However, the condition PNH causes a chronic breakdown of red blood cells (hemolysis).One of the symptoms of PNH is that red blood cells break down during the night, which leads to dark discoloration of your urine; hence the name 'paroxysmal nocturnal hemoglobinuria.' Other symptoms may be:
- jaundice
- exhaustion
- stomachache
- backache
- headache
- dyspnea
- swallowing difficulties
- erectile dysfunction
Besides the breakdown of blood cells, PNH can also cause a reduced bone marrow function and thrombosis. Thrombosis (a blood clot in a vein or artery) can lead to permanent disability and sometimes even death.
We treat PNH with the drug eculizumab (a complement inhibitor), combined with vaccinations and antibiotics. The PNH center of expertise has developed a program in which allows eculizumab to be administered safely at home or school/work by specially trained nurses.
Making an appointment
Your general practitioner or medical specialist can refer you to Radboudumc’s center of expertise in PNH. You will then be invited to our outpatients' clinic for an appointment at a proposed date and time. read moreMaking an appointment
Your general practitioner or medical specialist can refer you to Radboudumc’s center of expertise in PNH. You will then be invited to our outpatients' clinic for an appointment at a proposed date and time. We will also send you a consent declaration for the retrieval of your medical records.During your first visit, the internist-hematologist will check your state of health and explain the PNH disease, its symptoms and any treatment you will receive. Please bring a form of identification, your insurance card, any medication you use and the letter confirming your appointment, so that you know where to be in the hospital.
Patient organization
ERN
Disorders and treatments
Research and education
Participating in research
We will most probably ask you to participate in scientific research. Our research aims to improve treatments and to reduce its side effects.Education regarding PNH
We teach students, doctors, and specialists and so that future healthcare specialists are better at detecting PNH. We also offer both medical and scientific research internships. read moreEducation regarding PNH
We teach students, doctors, and specialists and so that future healthcare specialists are better at detecting PNH. Radboudumc’s center of expertise in PNH also offers both medical and scientific research internships.We also educate you as PNH patient, your loved-ones, and nurses involved in your treatment. We will train you and them in recognizing changes and complications, and explain how to act accordingly.