Session 21 hennekam_without_pictures

Very Rare Disorders organisation of care Raoul CM Hennekam Academic Medical Center UvA Amsterdam

Rare Disorders ,[object Object],[object Object],[object Object],[object Object]

Very Rare Disorders ,[object Object],[object Object],[object Object],[object Object]

Very Rare Disorders ,[object Object],[object Object],[object Object]

Very Rare Disorders ,[object Object],[object Object]

Very Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object]

Ultra Rare Disorders ,[object Object],[object Object]

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object]

Ultra Rare Disorders ,[object Object],? known 1:10,000 1:25,000 1:100,000 1:1,000,000 less than 1:1,000,000 Down FAS FraX CHARGE Prader-Willi Rubinstein- Taybi Marshall- Smith micro- imbalances

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object],total number in Europe 5,000,000-10,000,000

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object],centres for rare diseases 1/country or 1/30,000,000 inhab

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],but especially: Communication Trust

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

Ultra Rare Disorders ,[object Object],[object Object],[object Object],[object Object]

Ultra Rare Disorders ,[object Object],[object Object],[object Object]

Session 21 hennekam_without_pictures

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Session 21 hennekam_without_pictures