Stargardt's Connected

Stargardt's Connected Information Day
2025-11-15 14:00 - 17:30 (Europe/London) | Online (Zoom)
Register Now!
https://us02web.zoom.us/meeting/register/MeABUY-aTHW90Qg8-0ydMg
We have an exciting programme of presentations covering a range of topics. Here is the agenda for the day:

14:00-14:10: Introductions and order of the day
14:10-14:40: AAVantgarde Bio presentation with Q and A
14:40-15:10: Alkeus Pharmaceuticals presentation with Q and A
15:10-15:15: Break
15:15-15:45: Tech Session with Sam Seavey from The Blind Life with Q and A
15:45-16:15: Living well with Stargardt’s panel session with community members speaking about their experiences including Q and A:
– Emily – Navigating the education system
– Alice – Bringing up a young family when you have Stargardt’s
– Tom and Toby – Finding employment and being in the workplace
16:15-16:20: Plenary
16:20-16:30: Break
16:30-17:30: 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.

Thank you to our sponsors: Alkeus Pharmaceuticals and AAVantgarde Bio

Stargardt's Connected Young People's Zoom Session (December)
2025-12-01 17:30 - 18:30
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.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/jAiu-ZhzQZ-rN68KqyhUWw
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Parent's Zoom Session (December)
2025-12-01 19:00 - 20:00
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.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/jAiu-ZhzQZ-rN68KqyhUWw
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Community Zoom Session (December)
2025-12-06 12:00 - 13:30
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.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/TKgRTYsiTASvzV9KGcp7ig
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Young People's Zoom Session (January 2026)
2026-01-19 17:30 - 18:30
Exam tips and revision techniques.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/tzl0lnxhTfmNPwDEsWJCOg
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Parent's Zoom Session (January 2026)
2026-01-19 19:00 - 20:00
Exam 101 (Our QTVI will be on hand to answer questions about exams and revision resources)
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/x4-vQYwNRcW1DNX2Ww8cug
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Community Zoom Session (January 2026)
2026-01-31 12:00 - 13:30
A presentation from Stargardt’s Connected trustee Louise Kearney on clinical trials and jargon busting.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/Dc_MeGk5Q_m2XlT-ghiVzg
After registering, you will receive a confirmation email containing information about joining the meeting.
