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X-WR-CALNAME:Stargardt's Connected
X-ORIGINAL-URL:https://stargardtsconnected.org.uk
X-WR-CALDESC:Events for Stargardt's Connected
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250531T120000
DTEND;TZID=Europe/London:20250531T133000
DTSTAMP:20260430T162345
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:20250623T173000
DTEND;TZID=Europe/London:20250623T183000
DTSTAMP:20260430T162345
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:20250623T190000
DTEND;TZID=Europe/London:20250623T200000
DTSTAMP:20260430T162345
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:20250719T170000
DTEND;TZID=Europe/London:20250719T183000
DTSTAMP:20260430T162345
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:20250810T120000
DTEND;TZID=Europe/London:20250810T160000
DTSTAMP:20260430T162345
CREATED:20250619T130039Z
LAST-MODIFIED:20250709T121811Z
UID:10000010-1754827200-1754841600@stargardtsconnected.org.uk
SUMMARY:Picnic in the Park (2025)
DESCRIPTION:Come join us for our annual Summer Picnic in the Park. Bring your own picnic and have the opportunity to informally network\, and meet others with Stargardt’s and their families. \nPlease let us know you will be attending by emailing us on events@stargardtsconnected.org.uk
URL:https://stargardtsconnected.org.uk/event/picnic-in-the-park-2025/
LOCATION:Hyde Park\, Parade Ground\, London\, W2 2UH\, United Kingdom
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250913
DTEND;VALUE=DATE:20250914
DTSTAMP:20260430T162345
CREATED:20250709T121338Z
LAST-MODIFIED:20250815T111000Z
UID:10000011-1757721600-1757807999@stargardtsconnected.org.uk
SUMMARY:White Water Adventure Day with Stargardt’s Connected
DESCRIPTION:Join VICTA and Stargardt’s Connected at Lee Valley White Water Centre in September for an activity day making waves. \nTaking advantage of Lee Valley’s Olympic facilities\, we will begin the day with a Water Wipeout – a fun-sized inflatable obstacle course situated on the centre’s lake. Work your way over the obstacles\, while trying to stay on the course before making a splash with the slide at the end. After working up an appetite\, we’ll break for lunch\, and you’ll have a chance to catch your breath before tackling Lee Valley’s White-Water Legacy Loop; a 160m Canoe Slalom course purpose built for the 2012 Olympics! As part of this session\, you will learn basic rafting skills and how to raft safely before hitting the rapids – paddles up! \nGuided by Lee Valley instructors\, this is a perfect opportunity for those who haven’t tried white water rafting before\, or for those who would like to perfect their skills in riding the waves. It’s also a great chance to meet like minded individuals and participate in activities in a safe and supportive environment. \nDue to the nature of this activity\, we ask that participants have an appropriate level of water confidence to take part. Note: we welcome applications from families and priority for places will be given to VI children and their siblings – there may be opportunities for adults to join in however this cannot be guaranteed. Parents/guardians are required to stay on site for the duration of this activity. If you have any questions\, please do not hesitate to get in touch with the Activities team on activities@victa.org.uk. \nWho: 8 to 17 year olds plus immediate family \nLocation: Lee Valley White Water Centre\, Station Road\, Waltham Cross\, EN9 1AB \nCost: £5 per participating child (8 and over) \nClosing date: Friday 15 August \nFurther details and to register: https://www.victa.org.uk/victa-calendar/stargardts-white-water/ \nInformation about the White Water Centre at Lee Valley can be found here: https://www.better.org.uk/leisure-centre/lee-valley/white-water-centre
URL:https://stargardtsconnected.org.uk/event/white-water-adventure-day-with-stargardts-connected/
LOCATION:Lee Valley White Water Centre\, Station Road\, Waltham Cross\, EN9 1AB\, United Kingdom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251004T140000
DTEND;TZID=Europe/London:20251004T153000
DTSTAMP:20260430T162345
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:20251115T140000
DTEND;TZID=Europe/London:20251115T173000
DTSTAMP:20260430T162345
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:20251201T173000
DTEND;TZID=Europe/London:20251201T183000
DTSTAMP:20260430T162345
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:20251201T190000
DTEND;TZID=Europe/London:20251201T200000
DTSTAMP:20260430T162345
CREATED:20251120T094630Z
LAST-MODIFIED:20251120T094630Z
UID:10000014-1764615600-1764619200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Parent's Zoom Session (December)
DESCRIPTION:It’s our last parent’s session of the year and we will have Sian our QTVI there to answer any education-related queries. We know how hectic this time of year can be so we are delighted to have Zakia\, a wellbeing practitioner\, to bring some calm to the busyness and guide you through some breathing and meditation exercises. \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-parents-zoom-session-december/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251206T120000
DTEND;TZID=Europe/London:20251206T133000
DTSTAMP:20260430T162345
CREATED:20251120T094643Z
LAST-MODIFIED:20251120T094643Z
UID:10000016-1765022400-1765027800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (December)
DESCRIPTION:Following on from AAVantgarde Bio’s presentation at our Information Day\, we are delighted to welcome back Dr Claudio Spero to our last Community Zoom of the year. He will be speaking in more detail about the Stargardt’s studies CELESTE and STELLA and there will be opportunities for a Q&A after. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/TKgRTYsiTASvzV9KGcp7ig \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-december/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260119T173000
DTEND;TZID=Europe/London:20260119T183000
DTSTAMP:20260430T162345
CREATED:20260108T191156Z
LAST-MODIFIED:20260108T191156Z
UID:10000019-1768843800-1768847400@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Young People's Zoom Session (January 2026)
DESCRIPTION:Exam tips and revision techniques. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/tzl0lnxhTfmNPwDEsWJCOg \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-january-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260119T190000
DTEND;TZID=Europe/London:20260119T200000
DTSTAMP:20260430T162345
CREATED:20260108T190935Z
LAST-MODIFIED:20260108T190935Z
UID:10000018-1768849200-1768852800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Parent's Zoom Session (January 2026)
DESCRIPTION:Exam 101 (Our QTVI will be on hand to answer questions about exams and revision resources) \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/x4-vQYwNRcW1DNX2Ww8cug \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-january-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260131T120000
DTEND;TZID=Europe/London:20260131T133000
DTSTAMP:20260430T162345
CREATED:20260108T190826Z
LAST-MODIFIED:20260108T191324Z
UID:10000017-1769860800-1769866200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (January 2026)
DESCRIPTION:A presentation from Stargardt’s Connected trustee Louise Kearney on clinical trials and jargon busting. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/Dc_MeGk5Q_m2XlT-ghiVzg \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-january-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260225T173000
DTEND;TZID=Europe/London:20260225T183000
DTSTAMP:20260430T162345
CREATED:20260218T102444Z
LAST-MODIFIED:20260218T102444Z
UID:10000021-1772040600-1772044200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Young People's Zoom Session (February 2026)
DESCRIPTION:Getting Active with Ellie Dowdy\nWe will be joined by Ellie Dowdy\, a fantastic young member of the Stargardt’s Community who will be talking all about getting active with Stargardt’s. From the physical and emotional benefits\, to overcoming barriers and even using tech to stay fit\, Ellie will be talking us through it all. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/bnvFkhhASl-bimVzxXgiSg \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-february-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260228T120000
DTEND;TZID=Europe/London:20260228T133000
DTSTAMP:20260430T162345
CREATED:20260218T102619Z
LAST-MODIFIED:20260218T102619Z
UID:10000020-1772280000-1772285400@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (February 2026)
DESCRIPTION:Rare Disease Day Celebration with Dr Thales Guimaraes on latest Stargardt’s Research\nWe are delighted to have Dr Thales Guimaraes present at our Community Zoom on the latest Stargardt’s Research \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/Dc_MeGk5Q_m2XlT-ghiVzg \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-february-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260411T120000
DTEND;TZID=Europe/London:20260411T133000
DTSTAMP:20260430T162345
CREATED:20260313T091834Z
LAST-MODIFIED:20260313T091834Z
UID:10000023-1775908800-1775914200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (April 2026)
DESCRIPTION:We will be joined by Chantelle from Blind in Business for a presentation on what the organisation offers\, followed by Chris and Jess who will be sharing their career stories. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/5FawSpYqSDWQn6LTezY0rg \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-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260413T173000
DTEND;TZID=Europe/London:20260413T183000
DTSTAMP:20260430T162345
CREATED:20260313T090842Z
LAST-MODIFIED:20260313T091731Z
UID:10000022-1776101400-1776105000@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Young People's Zoom Session (April 2026)
DESCRIPTION:Come and join us for an eggciting Easter-themed Children and Young People’s Zoom session on Monday 13th April. We will be joined by Tilly\, who will be leading the session where we will be doing Easter activities such as arts and crafts and a scavenger hunt.  \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/Sg7ZAuyaTyepta7WZtOD1w \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-april-2026/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260413T190000
DTEND;TZID=Europe/London:20260413T200000
DTSTAMP:20260430T162345
CREATED:20260313T091952Z
LAST-MODIFIED:20260313T091952Z
UID:10000024-1776106800-1776110400@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Parents and Carers Zoom Session (April 2026)
DESCRIPTION:EHCP tips with QTVI Sian Muggridge \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/AwKt1jvpQxeUzAikxEwtsg \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-parents-and-carers-zoom-session-april-2026/
LOCATION:Online (Zoom)
END:VEVENT
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