The Wider Partners
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are groups or individuals who will commit to supporting the PSP by disseminating the PSP survey and helping the PSP to gather questions and uncertainties of practical clinical importance relating to the management or care of patients with Liver GSD. Partners represent the following groups:
- People who have Hepatic GSD.
- Carers of people who have Hepatic GSD.
- Health care professionals (including medical doctors, nurses and dietitians) with clinical experience of Liver GSD.
- Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to adversely affect those organisations’ views, causing unacceptable bias. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.
- Partners will be identified from across the world. It is important that all organisations which can reach and advocate for these groups should be invited to become involved in the PSP. The JLA Adviser, Katherine Cowan, will take responsibility for ensuring the various stakeholder groups are able to contribute equally to the process.