Supporting the patient and family with mucopolysaccharidosis disorders: the role of patient organizations.
Lavery
Christine
C
Society for Mucopolysaccharide and Related Diseases, MPS House, Amersham, Buckinghamshire, UK. c.lavery@mpssociety.co.uk
Ramaswami
Uma
U
D006801:Humans; D009083:Mucopolysaccharidoses; D010344:Patient Advocacy; D012657:Self-Help Groups / Q000458:organization & administration*; D012944:Social Support; D006113:United Kingdom