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Medische zorg


For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange syndrome. 

Individuen met CdLS behoeven levenslange medische, multidisciplinaire en sociale zorg. Toegang tot klinische beoordelingen, advisering en follow-up door een multidisciplinair team verbetert waarschijnlijk de gezondheidszorg en verhoogt waarschijnlijk de kwaliteit van leven. Er zijn barrières onderkend  die de toegang tot zorg bemoeilijken, waaronder gezondheids- of gedragsmatige  complicaties, geografische isolatie en financiële overwegingen. 

Tegenwoordig bereiken individuen met CdLS meestal volwassenheid en de bejaarde leeftijd. Dit brengt het risico te weeg dat individuen veelvoorkomende chronische ziektes ontwikkelen naast hun CdLS-gerelateerde medische problemen. 


Recommendation(s)

Medische zorg

R66
Individuals with CdLS and their families need life-long care provided by healthcare providers and social services, who should educate themselves about CdLS.
R67
Syndrome-specific and personalised care plans through shared decision-making should be offered to every individual with CdLS and their caregivers.


                                                                                                                                                                                                                                                              

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