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X-ORIGINAL-URL:https://hspgroup.org/
X-WR-CALNAME:HSP Support Group
X-WR-CALDESC:The HSP Support Group is a UK charity supporting those with Hereditary Spastic Paraplegia (HSP)
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BEGIN:VEVENT
CLASS:PUBLIC
UID:MEC-37d097caf1299d9aa79c2c2b843d2d78@hspgroup.org
DTSTART:20220518T120000Z
DTEND:20220518T133000Z
DTSTAMP:20220512T070600Z
CREATED:20220512
LAST-MODIFIED:20220512
PRIORITY:5
SEQUENCE:0
TRANSP:OPAQUE
SUMMARY:Welsh Cross Party Group at Senedd
DESCRIPTION:On Wednesday 18th of May, the Senedd Cross Party Group will be discussing its response to the UK strategy published in Jan 2021. It is important that HSP is the voice of Rare Diseases and a treatment strategy planned. Each of the Home nations is to produce its response to the England strategy published in 2021, so that it is clear what Scotland, Wales and Northern Ireland are planning in 2022.\nScotland are already consulting their nationals and N Ireland is to start. So now is an opportunity for the people in Wales to have a good HSP service.\nIt is scheduled to take place 12.00 – 13.30pm Wed 18th May. You are welcome to register to attend via Eventbrite.\nIn the meeting we will hear about:\n\nThe targets of the Action Plan to improve services for people with rare, genetic and undiagnosed conditions in Wales – includes HSP\nHow it will influence the rare condition landscape.\nKey barriers limiting access to diagnosis in the UK.\n\nAs some of you will not be able to attend because of other commitments, Mike Cain is intending to have a zoom meeting on Tuesday 17th at 19.00, to hear any views you wish him to express. The HSP Group is represented and at present will raise the following point;-\n\nWales is developing its Genetic Services and at present they are concentrated on children and are based in Cardiff.\n\nIf you have anything to add please attend the pre zoom meeting (see Mike for details) or contact him directly via email.\n
URL:https://hspgroup.org/events/welsh-cross-party-group-and-pre-zoom/
ORGANIZER;CN=Mike Cain:MAILTO:michaelcain123456@yahoo.com
CATEGORIES:Meetings
ATTACH;FMTTYPE=image/jpeg:https://hspgroup.org/wp-content/uploads/2022/05/jonny-gios-wZbflpI_ymg-unsplash.jpg
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