Two mothers of children with HSP, one from the UK the other from the US, have teamed up. They seek to gather data that might help researchers and clinicians working on treatments. They can also connect families with the same HSP types or variants, and aspire to create a global community of HSP parents.
Their survey has been open for 6 months and the organisers, Bridget Lassig and Ece Filiz, will soon be finalising the data collected. They will create a report to be shared with researchers, HSP support and cure organisations, and survey participants. The survey is open to people with childhood onset HSP (or their family). If this is you, and you haven’t done so already, please give a few minutes to complete the survey.
You can find their survey on Google Forms here: https://docs.google.com/forms/d/e/1FAIpQLSfhAecdHZBoUH7DSpifJlI-L1u2KFbkyAzoqans_sLE8aq8OA/viewform