On the run up to an announcement on the Wales Rare Disease Action Plan, journalist and HSP Support Group member, Phil Parry, discusses the issues faced by those with HSP in an article for The Eye.
Research request – Pregnant women
The MuM-PreDiCT research group is trying to improve care for pregnant women who have multiple long-term health conditions through research. They need help to prioritise outcomes that should be reported in all studies of pregnant women with multiple long-term conditions. The group would like to hear from you if both of these factors apply to you: You have been pregnant in …
Calling all people of Wales, Scotland and England…
Some of us will be online to Senedd, Holyrood and Westminster in a virtual reception (replacing the previous physical events). The British Rare Disease Strategy has already been produced and yet has to be ratified by the parliaments of Wales, Scotland and N Ireland.
YouTube: Falls with HSP
The second of our AGM presentations, Falling with HSP, presented by Coralie Seary is also available on our YouTube Channel.
YouTube – Mindfulness
Ray Owen talked to the group on 28th August about Mindfulness, Acceptance and Values. The recording of this is now on our Youtube Channel.
New YouTube video
It is another busy weekend for the group. The video from Henry Houlden’s talk on 17July is now on our YouTube channel https://www.youtube.com/watch?v=HtgQO-_vNBQ The next presentation is in an hour-or-so’s time – everyone is welcome. Also, the #HSP1000 challenge continues to run really well! – thank you to everyone!
1000 miles – week 2
Week 2 of #HSP1000 has been updated on the page. We’ve now completed 377 miles and have raised £2156. 19 people have travelled in 12 different ways. New methods this week are: mobility scooter, walking sticks, horse-riding and rowing. We are roughly following the A49, we have been through Shrewsbury and are now almost at Whitchurch. Some lovely stories have …
Now on Instagram
The group has a new Instagram page, so you can follow us there if you wish! https://www.instagram.com/ukhspgroup/