Parent of child with rare syndrome stands alone not lonely
Vereniging ZeldSamen offers parents/guardians the opportunity to join a larger network. The new website ZeldSamen.nl offers information about genetic syndromes, meetings with other parents, exchange of experiences about similar problems and support in daily life.
Link: https://www.ouderscentraal.nl/ouder-van-kind-met-zeldzaam-syndroom-staat-niet-alleen/