The Gauchers Association is pleased to announce the Advocacy Research Project conducted by Martin Sweeney has now been completed and we should like to share the findings.
The research involved gathering information and opinions from a wide range of individuals, from LSD patient organisations to medical professionals, and a number of patients and family members affected by Gaucher disease who shared their experiences with Martin.
This information was brought together in a report for the board of trustees of the Gauchers Association; click here to view a summary report; to request a full copy of this report either by post or PDF please email Sarah on firstname.lastname@example.org
The main findings of the research were that, although the majority of patients and families do not require additional support with non-medical issues, there are some areas where the Gauchers Association could concentrate on advising and assisting members, particularly in supporting families affected by type 2 and 3 Gaucher Disease, those recently diagnosed with the condition and in providing advice and support and advice with regards to financial issues for some patients and families.
The board of trustees accepted these recommendations, and unrestricted grants have been provided by Genzyme Therapeutics and Shire Human Genetics in order to employ a Patient and Family Support Worker. The post is initially funded for a period of 2 years, during which its effectiveness will be measured to assist with future planning.
The Association would like to thank everybody for giving up their valuable time and sharing their knowledge and experience with Martin. We have no doubt that this project will help to improve the level and nature of the support available to all patients and family members affected by Gaucher Disease in the UK.