26 November 2022
It was great to have 16 people meet up at the Packhorse Pub on Saturday 26th November for a pre-Christmas Lunch and was really lovely to welcome four new members plus partners/friends.
People may be interested to know that the European Reference Network have just published a ‘patient journey’ for people with HSP. Each row on the journey describes a different aspect of HSP. Headlines give details about HSP, and cover what may happen in clinic. The journey also gives some of the challenges faced by people with HSP, and some aspirational …
20 November 2022
With this being the first Sunday Milford meeting since lockdown, there was a lot of catching up to do. Our speaker was Paul Graham, from the Queen Elizabeth Foundation for Disabled People (QEF) Mobility Services.
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 …
22nd October 2022
The meeting went ahead despite the muddle of Meta Rejigging of Facebook, and several zoomed including some new. We spent a lot of time talking about rollators, bikes and other rural mobility aids that could cope with tough surfaces as well as what adjustments Motorbility might make.
16th October 2022
We met at Feering Community Centre, near Colchester in Essex on Sunday, 16th October 2022. Most of us were regular attenders but we were delighted to be joined, for the first time, by one of our members from Cambridge.
We are pleased to announce our first group social meeting, on Saturday 8th October 2022 in Birmingham. Members should find further details of the day in their e-mails. We need members to confirm attendance by 26th Sept so that we can ensure appropriate catering. The main objective of the day is for socialising with other members. However, there are also …