AGM Presentation – Olivia Rickmans work at Exeter (by Zoom)

AGM Presentation via Zoom

On Weds 24th August at 7pm Andrew Crosby and Emma Baple will give us an overview of the work that Olivia Rickman did for her PhD via Zoom. We funded part of Olivia’s PhD at Exeter between 2016 and 2019. There should be time for some questions and answers afterwards. If you wish to attend please ask for details of …

AGM Presentation – Benefits Overview (by Zoom)

AGM Presentation via Zoom

On Weds 10th August at 7pm Janet McBride will give us an overview of disability and other related benefits via Zoom. There should be time for some questions and answers afterwards. If you wish to attend please ask for details of the Zoom link.  

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AGM 2022

News

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

Colchester Branch Meeting Report

Group Meeting

10th April 2022
We met at Feering Community Centre, near Colchester in Essex on Sunday, 10th April for our first face-to-face meeting since October 2019.  It was so good to meet in person again.

Hitchin get together report

Group Meeting

30th April 2022
The Hitchin Get together was held on the 30th April 2022 @ 13.30 @ the Orange Tree pub. It was the first face to face meet up since the pandemic began in 2020.

Milford meeting report – So good!

23rd April 2022
During the afternoon, I heard these words many times. Why? So good to see each other again. So good to be able to chat and share again. So good not to be the only one with a funny walk. This last comment was surprising, but confirms the benefits of meeting with others with the same disability.

Social get together (Hitchin)

Group Meeting

Get together @ The Orange tree pub, Hitchin, SG4 9DR. Saturday April 30th @ 13.30pm This is the first face to face ‘Hitchin’ Get together since before the pandemic began. A chance to get together, have a chat & late lunch, with fellow HSP’rs. There are no speakers at this event. Please let me know if you can attend, so we …

Zoom meeting for families with HSP

We are holding a zoom meeting for families with HSP at 1.30pm on 18th May. If the younger members of your family have HSP we would love you to join us for an informal chat. For joining details, please contact the meeting organisers Penny and June.

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.