Table 1 Distribution of respondents (n = 181) by patient advocacy groups
Patient group | N (%) |
|---|---|
National Mucopolysaccharidosis Society (USA) | 100 (55.2%) |
United Kingdom Mucopolysaccharidosis Society | 36 (19.9%) |
Duke Pompe Clinical and Research Group (USA) | 24 (13.3%) |
International Gaucher Alliance | 12 (6.6%) |
Instituto Vidas Raras (Brazil) | 9 (5%) |