ABSTRACT
Patients’ Support Groups — Pre and Post Enzyme Replacement Therapy .........474 When Patients Became Health Care Professionals .....................................475 Patients’ Needs .............................................................................................475 Information...................................................................................................476 Publicity .......................................................................................................477 Specialist Centers .........................................................................................477 Availability of Treatment .............................................................................478 Obtaining Treatment ....................................................................................478 European Gaucher Alliance .........................................................................479
Facilitating Interactions .........................................................................................480 Neuronopathic Gaucher Disease (NGD) .....................................................480 Formation of a Support Service for Neuronopathic Gaucher Disease Families in the U.K......................................................................................481 European Consensus ....................................................................................481
Neuronopathic Gaucher Disease Booklets............................................................482 Neuronopathic Family Conferences ............................................................482 Families Coping with Neuronopathic Gaucher Disease .............................482 Type 2 Gaucher Disease ..............................................................................483 Fundraising...................................................................................................483
The Children’s Gaucher Research Fund ...............................................................484 Amazing Progress, But …...........................................................................484 Enzyme Replacement for Neuronopathic Gaucher Disease .......................484 Difficult Decisions .......................................................................................485 Frustration ....................................................................................................485 The Children’s Gaucher Research Fund Is Born ........................................486
