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X-ORIGINAL-URL:https://stargardtsconnected.org.uk
X-WR-CALDESC:Events for Stargardt's Connected
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TZID:Europe/London
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251201T173000
DTEND;TZID=Europe/London:20251201T183000
DTSTAMP:20260429T163338
CREATED:20251120T094633Z
LAST-MODIFIED:20251120T094633Z
UID:10000015-1764610200-1764613800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Young People's Zoom Session (December)
DESCRIPTION:The festive season is upon us and to celebrate we will be holding a Christmas-themed hour for our next children and young people’s Zoom session. This will include some festive games and cookie decorating. Don’t forget to wear your festive jumpers. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/jAiu-ZhzQZ-rN68KqyhUWw \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-young-peoples-zoom-session-december/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251115T140000
DTEND;TZID=Europe/London:20251115T173000
DTSTAMP:20260429T163338
CREATED:20251011T221312Z
LAST-MODIFIED:20251114T091625Z
UID:10000013-1763215200-1763227800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Information Day
DESCRIPTION:Register Now!\nhttps://us02web.zoom.us/meeting/register/MeABUY-aTHW90Qg8-0ydMg \nWe have an exciting programme of presentations covering a range of topics. Here is the agenda for the day: \n\n14:00-14:10: Introductions and order of the day\n14:10-14:40: AAVantgarde Bio presentation with Q and A\n14:40-15:10: Alkeus Pharmaceuticals presentation with Q and A\n15:10-15:15: Break\n15:15-15:45: Tech Session with Sam Seavey from The Blind Life with Q and A\n15:45-16:15: Living well with Stargardt’s panel session with community members speaking about their experiences including Q and A:\n– Emily – Navigating the education system\n– Alice – Bringing up a young family when you have Stargardt’s\n– Tom and Toby – Finding employment and being in the workplace\n16:15-16:20: Plenary\n16:20-16:30: Break\n16:30-17:30: Breakout Sessions – informal small group sessions to socialise and speak to other members. There will be a separate Parent / Carer breakout session for those who want to join\, with Sian QTVI (qualified teacher of visually impaired) there to answer any education-related questions.\n\nThank you to our sponsors: Alkeus Pharmaceuticals and AAVantgarde Bio
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-information-day/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251004T140000
DTEND;TZID=Europe/London:20251004T153000
DTSTAMP:20260429T163338
CREATED:20251001T070543Z
LAST-MODIFIED:20251001T070620Z
UID:10000012-1759586400-1759591800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (October)
DESCRIPTION:Vicky\, Rob and Marina will discuss travel tips for people with VI. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/6CWtuK47STOWmkXTptrNGQ \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-community-zoom-session-october/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250719T170000
DTEND;TZID=Europe/London:20250719T183000
DTSTAMP:20260429T163338
CREATED:20250619T125856Z
LAST-MODIFIED:20250619T125856Z
UID:10000009-1752944400-1752949800@stargardtsconnected.org.uk
SUMMARY:Community Zoom Session (July)
DESCRIPTION:We are delighted to have Dr. Alekseev\, a Principal Investigator for the Belite Bio DRAGON II study at Duke University Hospital (Duke Eye Center USA) joining this session to share recent research updates on Stargardt’s disease and providing an update on the DRAGON II Study clinical trials. In the second part\, we will have our usual breakout sessions where you’ll have the opportunity to speak to others in smaller groups and share your experiences. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/_Tcxt2ydQ3uqDrNSqHT9Kg \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/community-zoom-session-july/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250623T190000
DTEND;TZID=Europe/London:20250623T200000
DTSTAMP:20260429T163338
CREATED:20250619T125654Z
LAST-MODIFIED:20250619T125654Z
UID:10000008-1750705200-1750708800@stargardtsconnected.org.uk
SUMMARY:Parents' Zoom Session (June)
DESCRIPTION:Informal chat to share experiences (joined by QTVI Sian Muggridge) . \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/a_DVjGY8QkOP_QI2fANg1w \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/parents-zoom-session-june/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250623T173000
DTEND;TZID=Europe/London:20250623T183000
DTSTAMP:20260429T163338
CREATED:20250619T121501Z
LAST-MODIFIED:20250619T121501Z
UID:10000007-1750699800-1750703400@stargardtsconnected.org.uk
SUMMARY:Children and Young People's Zoom Session (June)
DESCRIPTION:Living with Stargardt’s: Sharing tips and experiences and show and tell your favourite apps/tech. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/TAUnTBl0RJCZoOUSKOp0bw \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/children-and-young-peoples-zoom-session-june/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250531T120000
DTEND;TZID=Europe/London:20250531T133000
DTSTAMP:20260429T163338
CREATED:20250521T083209Z
LAST-MODIFIED:20250521T083209Z
UID:10000006-1748692800-1748698200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (May)
DESCRIPTION:Jonathon Vine\, Senior Director of Clinical Operations at SpliceBio will provide an update on their Stargardt’s clinical trials with an opportunity for questions and answers afterwards. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/N86MUBXtRtifMOTxUpucVw \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-community-zoom-session-may/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250412T140000
DTEND;TZID=Europe/London:20250412T153000
DTSTAMP:20260429T163338
CREATED:20250406T152545Z
LAST-MODIFIED:20250406T152545Z
UID:10000005-1744466400-1744471800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (April)
DESCRIPTION:Emmy award winning actress Ellen Gould will be joining us to give an update on her upcoming film\, Seeing Stars\, inspired by stories of five women with Stargardt’s. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/WL0HXSPoRSqXTwxet4VOPQ \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-community-zoom-session-april/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250331T190000
DTEND;TZID=Europe/London:20250331T200000
DTSTAMP:20260429T163338
CREATED:20250317T100805Z
LAST-MODIFIED:20250317T100805Z
UID:10000004-1743447600-1743451200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Parent's Zoom Session
DESCRIPTION:A chance for parents of children and young people with Stargardt’s to get together and share ideas and discussion with other parents in the community. This month we will have a Q&A with Sian Muggridge\, QTVI (qualified teacher of young people with vision impairment) all about education. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/qYW80-rZRdCaVDmSBrTU4A \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-parents-zoom-session/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250331T173000
DTEND;TZID=Europe/London:20250331T183000
DTSTAMP:20260429T163338
CREATED:20250317T100416Z
LAST-MODIFIED:20250317T100559Z
UID:10000003-1743442200-1743445800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Young People's Zoom Session
DESCRIPTION:A chance for young people with Stargardt’s to get together\, share ideas and have discussions with other young people in the community. This month we will be talking about how to advocate for yourself. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/X9o4obwUQDK7AVA_sgZ9KA \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-young-peoples-zoom-session/
LOCATION:Online (Zoom)
END:VEVENT
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