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Within Europe, Centers of Expertise exist to provide expert management and care for rare disease patients. These centers are made up of health care professionals and researchers who work together to provide treatment, and also continue research into their specialized fields.
Why Centers of Expertise?
A center that is designated this way is then able to join European Reference Networks, which provide cross-border expertise for rare disease treatments and research. This is especially vital in the rare disease world, as this creates a
In the Netherlands, this is done within the National Plan For Rare Diseases ( Nationaal Plan Zeldzaam Ziekten NPZZ), and coordinated by the Ministry of Health, Welfare and Sport (VWS).
A Center of Expertise is recognized by the ministry for a period of 5 years. The first awards were giving in 2015, meaning that in 2021, several hospitals came up for review within the Netherlands.
Our Involvement
In April 2021, the TAPS Support Foundation was approached by the Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP), the national patient alliance for rare and genetic diseases in the Netherlands to assist with the ranking process of the Centers of Expertise in the Netherlands.
Our role would be to provide patient feedback and experience for medical centers who would like to be recognized for their work in rare twin complications and diseases. In May and June, 2021, we underwent training and gathered patient experiences for a large research hospital, and prepared a report on their management of Twin-Twin Transfusion Syndrome (TTTS), Twin Anemia Polycythemia Sequence (TAPS), Twin Reversed Arterial Perfusion Syndrome (TRAP) and Selective Fetal Growth Restriction (SFGR). We gathered information from within our community, to ensure that all voices were heard and a balanced outlook was given.
This was submitted mid-June, and we are currently waiting to hear the outcomes.