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Centers of expertise for rare diseases

Within the Erasmus MC there are many formally endorsed centers of expertise where rare disease individuals can be treated. When fewer than 5 in 10.000 people in Europe suffer with a specific disease, the disease is considered rare in the Netherlands. In total there are over 7.000 known rare diseases.

About Centers of expertise for rare diseases

List of centers of expertise for rare diseases in Erasmus MC

Erasmus MC houses 55 recognized centers of expertise for rare diseases. These centers have been officially endorsed by the Ministry of Health, Welfare and Sport.

The aim of the Ministry of Health, Welfare and Sport is to inform people living with a rare disease whom to turn to in Europe for diagnosis, paramedical guidance, multidisciplinary care and treatment.
A complete overview of endorsed centers of expertise is a big step towards better, integral care for patients with a rare disease

  • Erasmus MC Academic Breast and Ovarian Cancer Center
  • Academic center of excellence for Interstitial Lung Disease
  • Academic center of excellence for sarcoidosis
  • Center for Congenital bone marrow failure and leukemia predisposition syndromes (in collaboration with LUMC)
  • Center for Genetic Eye Diseases Rotterdam
  • Center for Lysosomal and Metabolic Diseases
    • Pompe Center
    • Center for PKU, urea cycle disorders and organic acidurias
    • Porphyria Expertcenter Rotterdam
  • Center of rare skin diseases
  • Cystic Fibrosis center of expertise Rotterdam
  • The ENCORE expertise center for neurodevelopmental disorder
  • Erasmus MC Bone Center
  • Erasmus MC center of expertise for inflammatory disorders of the central nervous system
  • Erasmus MC Expert Center Endocarditis
  • Erasmus MC Centre of Expertise for Endocrine Disorders
    • Outpatient clinicEndocrinology
    • Center for Neuro Endocrine Tumors (NET)
  • Erasmus MC Center of Expertise for Rare Kidney and Urinary Tract Disease
  • Erasmus MC Liver Center of expertise
  • Erasmus MC Oesophageal and Gastric Cancer center of expertise
  • Expert Center Genetic Obesity(in collaboration with Amsterdam UMC)
    • Obesity Clinic CGG (Healthy Weight Centre) Adults
    • Obesity Clinic CGG (Healthy Weight Centre) Children
  • Expert Center Prader Willi syndrome
  • Centre of expertise for inflammatory myopathies
  • Expert center for rare head & neck tumors
  • Expertise center for rare IBD and intractable diarrhea
  • Expert Center Rare Growth Disorders
  • Expertise center Erasmus MC Vascular Genetics
  • Center of expertise for Familian and Hereditary Tumors
  • Expert Center spinal disraphism Rotterdam
  • Centre of Expertise for Uveitis
  • ErasmusMC Center of expertise for Congenital Hand and Upper Limb Differences
  • Center of expertise for congenital heart diseases Erasmus MC Rotterdam
  • Center of expertise for congenital lung malformations
  • Center of expertise for DSD (Disorders of Sex Development)
    • DSD center
    • Turner Syndrome Center
  • Center of expertise for Ehlers-Danlos syndrome
  • Center of expertise for inherited cardiovascular diseases
  • Hematologic malignancies center of expertise
  • Centre of expertise for Children with Autoimmune Diseases
  • Center of expertise for pediatric laryngotracheal stenosis
  • Center of expertise for lung cancer
  • Centre of expertise for oligodontia
  • Center of expertise for Pulmonary hypertension
  • Center of expertise for rare mast cell related diseases
  • Center of Expertise for Rare Systemic Immune Disease
  • Center of expertise for rare urinary tract tumors & testicular tumors
  • Center of expertise for pregnancy induced diseases
  • Frontotemporal Dementia center of expertise
  • Expertise Center for Rare Bleeding disorders
    • Expertise Center for Rare Bleeding disorders for adults
    • Expertise Center for Rare Bleeding disorders for children
  • Brain Tumor Center of Expertise
  • Pediatric Surgical Centre for Anatomical Congenital Malformations
  • Leprosy Center of Expertise (i.s.m. LUMC)
  • Mesenteric Ischemia Center Rotterdam (i.s.m. SFVG)
  • Dutch Craniofacial Center of Expertise
  • Neuromuscular Center Erasmus MC
  • Immunodeficiency center of expertise
  • Rotterdam Ocular Melanoma Center (ROMC)
  • Cleft Center of expertise Erasmus MC
  • Sickle Cell and Thalassemia Comprehensive Care Center
    • HBP Sickle Cell Center (adults)
    • Sickle Cell Center (Children)
  • Soft tissue sarcoma center of expertise
 

National plan: recognition of centers of expertises for rare diseases

On October 10th of 2013 the National Plan of Rare Diseases (NPZZ) was launched in the Netherlands. The main task for implementation of this national plan is the endorsement of centers of expertise for rare diseases. The Ministry of Health, Welfare and Sport has instructed the NFU (Dutch federation of University Medical Centers) to develop and implement a procedure to formally recognize centers of expertise in the Netherlands and create an overview of all centers. This complete overview makes it for the people living with a rare disease and for the healthcare providers more easier to see whom to turn to for diagnosis, multidisciplinary care and treatment.

Procedure and recognition according to European standard

The procedure for endorsement of centers of expertise for rare diseases has been developed by NFU in cooperation with Orphanet Nederland and VSOP. This procedure ensures that the medical-science perspective and patient perspective is guaranteed. The criteria that a center of expertise must meet are developed and published by the ministry of Health, Welfare of Sport and are based on European standards.

Candidate centers are evaluated from 2 perspectives: by experts and by involved patient organizations. With the input from the evaluations an independent committee issues a recommendation for the minister of Health, Welfare and Sport on whether or not to recognize a center of expertise. Based on this recommendation the ministry of Health, Welfare of Sport takes the decision to recognize the centers of expertise and informs them.

 

Further information

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