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.

We are recruiting

Can You Help

Can you help us? We are seeking trustees to join our board.

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 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

1000 mile challenge week 2 route

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!

1000 Mile Challenge – Week 1

HSP 1000 Mile Challenge

The first week of the 1000 mile challenge finished on Friday 16th July. We have got off to a really good start! Overall we have travelled 169 miles or 272 km. 10 members and the family of a former member have taken part, using seven different modes of transport. The distances The mode of transport with the greatest distance is …