Sydney FSHD Patient Information Evening

Meet world-leading researchers, hear the latest developments in FSHD and connect with your community.

Tuesday, 27 October 2026

Join the FSHD Global Research Foundation for a special Patient Information Evening in Sydney, bringing together people living with FSHD, their families, researchers and healthcare professionals.

We are delighted to welcome internationally renowned FSHD researchers Professors Peter and Takako Jones, alongside Australian neurologists and healthcare professionals, for an opportunity to hear about the latest developments in FSHD research and care.

Whether you are living with FSHD yourself, supporting a loved one or simply want to learn more, this event is an opportunity to:

Hear directly from leading researchers about progress in FSHD research and emerging treatments.
Learn from local specialists about FSHD and clinical care.
Ask questions and engage with researchers and healthcare professionals.
Connect with others in the FSHD community and share experiences.

This is a free community event, with food and refreshments provided.

We gratefully acknowledge Soufflé Therapeutics for sponsoring this event and supporting opportunities for the FSHD community to connect with leading researchers. Souffle's Clinical trial is underway in Australia and we will be sharing information about their program at the event.

We look forward to welcoming you!

Venue and getting there:

25hours Hotel Sydney The Olympia
1 Oxford St, Paddington NSW 2021

Public transport:

Train

Kings Cross Station – approximately 13 minutes' walk.
Museum Station – approximately 14 minutes' walk.

Light rail

Surry Hills stop – approximately 12 minutes' walk.

Bus

Several bus routes service Oxford Street, including routes 333 and 440. Nearby stops include:

Oxford Street after Verona Street
Oxford Street at West Street
Oxford Street after South Dowling Street

These stops are approximately 100 metres from the venue.

Parking

Paid parking is available nearby at St Vincent's Hospital, 404 Victoria Street, Darlinghurst NSW 2010.

Please check St Vincent's Hospital parking information for current rates, accessibility information and operating hours.

Accessibility

We want everyone in our FSHD community to feel welcome and able to participate.

25hours Hotel Sydney The Olympia offers wheelchair-accessible facilities including an accessible restroom and step free access. For step-free access, please use the hotel's side entrance via the driveway on South Dowling Street.

If you have specific accessibility requirements or need assistance to participate comfortably, please contact the FSHD Global team ahead of the event to discuss your needs.

Contact the host of FSHD Global — Sydney Community Patient Information Day

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