Posted - May 2020 in HSPRF News
HSP families invited to participate
You are invited to take part in a survey about how COVID-19 (coronavirus) is affecting you and your family. Your responses are anonymous and will remain confidential. Take the survey!
You must live in Australia and be over 18 years of age to participate. The survey has 36 questions and should take 10 minutes to complete. It will close on Saturday 13 June 2020 (ignore the deadline showing on the survey website page that says the deadline is Wednesday, 27 May. The deadline really is 13 June!).
The purpose is to understand the type of issues that you are having and how significant they are during this period. The peak genetic, undiagnosed and rare disease (GUARD) groups, representing over one hundred patient support organisations in Australia have organised the survey. They will use summarised information to provide targeted education, advocacy, support and services on behalf of the genetic, undiagnosed and rare disease community.