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https://www.surveymonkey.co.uk/r/YVR...eid=f2c39037d5
'The UK Rare Disease Forum (the group charged with monitoring the implementation of the UK Strategy for Rare Diseases) will be reporting on the progress made in delivering the 51 commitments in the Strategy in time for Rare Disease Day 2018.
As part of the UK Rare Disease Forum’s work in monitoring progress they want to hear from families and patients affected by rare conditions.
We will not tell anyone that you have taken part in this survey. Your contact details and any written records of your responses during the study will be kept as password protected files which only the project team can access. Only aggregated information and anonymised quotes will be passed on to the UK Rare Disease Forum. If you chose to provide contact details, those will not be passed on to any third party.
Genetic Alliance UK will retain your submission for use to support the Rare Disease UK campaign and our policy work. We may use some anonymised quotes in future publications, but no personal information will appear.'
'The UK Rare Disease Forum (the group charged with monitoring the implementation of the UK Strategy for Rare Diseases) will be reporting on the progress made in delivering the 51 commitments in the Strategy in time for Rare Disease Day 2018.
As part of the UK Rare Disease Forum’s work in monitoring progress they want to hear from families and patients affected by rare conditions.
We will not tell anyone that you have taken part in this survey. Your contact details and any written records of your responses during the study will be kept as password protected files which only the project team can access. Only aggregated information and anonymised quotes will be passed on to the UK Rare Disease Forum. If you chose to provide contact details, those will not be passed on to any third party.
Genetic Alliance UK will retain your submission for use to support the Rare Disease UK campaign and our policy work. We may use some anonymised quotes in future publications, but no personal information will appear.'