About center of expertiseRadboudumc'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. Our PNH team works closely and permanently within several medical disciplines.
Our team consists of:
- Internist hematologists
- Specialist nurses
- Molecular biologist
- Coagulation physiologist
Within this center of expertise, we want to improve the quality of diagnoses, treatment and care for patients with PNH. That is why we use:
- Advanced Diagnostics
- Protocol treatment
- Specialized home care
- Extensive collaboration with the other PNH centers of expertise in the world
- Cooperation with other hospitals and general practitioners in the Netherlands
- Knowledge transfer
- Trial Bureau of Hematology-Medical Oncology
- Hematology Laboratory (Laboratory Medicine Department)
The center of expertise in PNH is known both nationally and internationally for its patient care and its active role in scientific research. Our PNH specialists have close ties with their colleagues elsewhere in the world so that their knowledge and skills are always up to date.
The Ministry of Health, Welfare and Sport has acknowledged the center of expertise in PNH.
About the Radboudumc center of expertiseParoxysmal 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:
- 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 appointmentYour 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.
Participating in researchWe will most probably ask you to participate in scientific research. Our research aims to improve treatments and to reduce its side effects.
Education regarding PNHWe 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.