AGM Tomorrow

AGM Welcome

It is our 2022 AGM tomorrow morning, via Zoom. Looking forward to sharing our activities form the last year with our members!

AGM 2022 Voting underway


Our AGM is coming up on 16th July via Zoom to make it accessible to people who cannot travel. We’ve electronic voting in advance again this year. Members should check their e-mails for a link to vote. Please have your say in how we are run!


AGM 2022


The Group AGM will be via Zoom on Sat 16th July 2022

The Potato Pants Festival is back!

The 2022 Potato Pants festival is taking place on September 3rd at Cobham Sports and Social club on the outskirts of Wimborne.  It’s a family friendly festival with activities and facilities to entertain the children.  

Home affairs

Welsh Parliament

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.

We are recruiting

Can You Help

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