35 results on '"Lavery, Christine"'
Search Results
2. Mortality in Patients with Morquio Syndrome A
3. Evaluating a Psychoeducational, Therapeutic Group for Parents of Children with Autism Spectrum Disorder
4. Mortality in Patients with Morquio Syndrome A
5. The Patient Perspective on Rare Diseases
6. Supporting the patient and family with mucopolysaccharidosis disorders: the role of patient organizations
7. Mucopolysaccharidosis type II: European recommendations for the diagnosis and multidisciplinary management of a rare disease
8. The prevalence of and survival in Mucopolysaccharidosis I: Hurler, Hurler-Scheie and Scheie syndromes in the UK
9. Patient organisations working in partnership to research the patient experience of rare diseases: The MPS III survey
10. Impact of elosulfase alfa treatment on patient-reported outcomes in Morquio syndrome type A: Results from the first year of a managed access agreement in England
11. Clinical outcomes in Morquio syndrome type A treated with elosulfase alfa: results from the managed access agreement in England
12. Collaborative working to advance standards of care and the well-being of lysosomal disorder patients and families in the UK
13. A consensus conference for cognitive endpoints for clinical trials and natural history studies in MPS diseases
14. Mucopolysaccharidosis and Adulthood: Genetics, Inheritance, and Reproductive Options
15. Mortality in patients with Sanfilippo syndrome
16. Recommendations on clinical trial design for treatment of Mucopolysaccharidosis Type III
17. Multi-stakeholder engagement leading to access to treatment for MPS IVA (Morquio syndrome type A), a model for the ultra rare disease community
18. From testimonials to qualitative research embedded in an MPS IIIA observational study
19. The diagnostic journey of patients with mucopolysaccharidosis I: A real-world survey of patient and physician experiences
20. Recommendations for initiation and cessation of enzyme replacement therapy in patients with Fabry disease:the European Fabry Working Group consensus document
21. Recommendations for initiation and cessation of enzyme replacement therapy in patients with Fabry disease: the European Fabry Working Group consensus document
22. Pedigree analysis: A call to action to raise awareness of Fabry disease and the importance of family history evaluation
23. Raising awareness of lysosomal diseases amongst British medical students
24. Pedigree analysis in patients with Fabry disease: Evaluating changes in referral and diagnosis over successive generations
25. Treatment decision making for parents of children with lysosomal disorders in the era of rapidly advancing medical options
26. The Burden Endured by Caregivers of Patients With Morquio A Syndrome
27. Burden of disease suffered by caregivers of patients with Morquio syndrome type A: results from a self-reported outcomes survey
28. Pedigree analysis in patients with Fabry disease: evaluating changes in referral and diagnosis over successive generations
29. Burden of disease suffered by patients with Morquio syndrome type A: results from a patient-reported outcomes survey
30. Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes survey
31. Mucopolysaccharidosis type II: European recommendations for the diagnosis and multidisciplinary management of a rare disease
32. Evaluating a Psychoeducational, Therapeutic Group for Parents of Children with Autism Spectrum Disorder
33. 32. International patient survey demonstrates treatment satisfaction for mucopolysaccharidosis I
34. Burden of disease in patients with Morquio A syndrome: results from an international patientreported outcomes survey.
35. A three- to six-year follow-up of former long-stay residents of mental handicap hospitals in Northern Ireland
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