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Table 1 Participants

From: The German National Action League for people with rare diseases: translating the three tiers center system into active co-operation, a one center experience

Presentations

Attendees/Enrolled

Medical sub-specialities (N)

Kick-off meeting and presentation on rare metabolic diseases

15/30

Internal medicine (10), general practitioner (2), neurology (3)

M. Gaucher

3/10

Internal medicine (3)

Pompe Disease

3/ 8

Internal medicine (1), neurology (2)

Mucopolysaccharidosis

2/ 5

Internal medicine (2)

Internal medicine (3), paediatric

Phenylketonuria

14/25

medicine (2), neurology (1), dietitian (8)a

  1. a None of the dietitians had been officially invited, and thus were not calculated in the percentage of physicians responding