Back to directory

Groningen Amyloidosis Center of Expertise

University Medical Center Groningen

AL Amyloidosis ATTRv ATTRwt AA Amyloidosis 7 Rare Subtypes

Contact Information

Primary Contact

Hans Nienhuis

Coordinator of GrACE

Activity level

  • Patients per year800
  • New diagnoses per year200

Multidisciplinary team

  • HematologyOn-site
  • CardiologyOn-site
  • NephrologyOn-site
  • NeurologyOn-site
  • PathologyOn-site
Other specialists
GastroenterologyHepatologyPulmonologyRheumatologyGeneticistsGenetic counsellorsNuclear medicine specialistsRadiologistsTransplant programme - heartTransplant programme - kidneyTransplant programme - liver

Diagnostic capabilities

  • EchocardiographyOn-site
  • Cardiac MRI (CMR)On-site
  • Radionuclide imagingOn-site
  • Histopathology (Congo red)On-site
  • Amyloid typingOn-site
  • Genetic testingOn-site
  • Fat aspiration / labial gland biopsyOn-site
  • Organ biopsiesOn-site
Partner laboratories

We sometimes send biopsies to the NAC London for MS analysis and recently we also started a collaboration for MS with Pavia

Subtype expertise

  • ALYes
  • ATTRvYes
  • ATTRwtYes
  • AAYes
Rare subtypes
Localised amyloidosisGelsolin (AGel)Apolipoprotein A-I (AApoA1)Apolipoprotein A-IV (AApoAIV)Leukocyte chemotactic factor 2 (ALECT2)Fibrinogen A alpha-chain (AFib)Other
Referral pathways

Patients with rare types of amyloidosis are referred to us through several pathways. Amyloid may be detected in a kidney biopsy by a nephrologist, after which the patient is referred to our center. In other cases, amyloid is identified by an ENT specialist or an ophthalmologist. Occasionally, patients are referred by a cardiologist with suspected cardiac amyloidosis and are subsequently found to have a rare type of amyloidosis.

Treatment options

  • Chemotherapy (AL)Available on-site
  • TTR stabilizersAvailable on-site
  • RNA interferenceAvailable on-site
  • Antisense oligonucleotidesAvailable on-site
  • Stem cell transplantAvailable on-site
  • Heart transplantAvailable on-site
  • Kidney transplantAvailable on-site
  • Liver transplantAvailable on-site

Patient support services

Services offered
Psychosocial supportSocial workGenetic counsellingNutritional guidance (dietitian)Specialty pharmacyPatient support groupsPalliative careFinancial or access counselling
Other support services

We have developed a physiotherapy guideline for systemic amyloidosis and established a network of physiotherapists. Our center offers all of the above services; however, they are not specifically tailored for amyloidosis. We refer the patient to a healthcare professional (such as a dietitian, social worker, psychologist, and/or physiotherapist) in the region where the patient lives.

Networks & telemedicine

  • Telemedicine / virtual consultationYes
  • Part of a formal amyloidosis networkYes
  • Diagnostic services for other organisationsYes
Network webpage
Diagnostic services contact

Last confirmed: 16 March 2026

Listings are self-reported by each center and have not been independently verified by the International Society of Amyloidosis (ISA). Inclusion in this directory does not constitute certification, accreditation, or endorsement by ISA.