LGMDR9 (LGMD2i) European Patient Day
May 25
| Free
Excited to share about the first LGMDR9 (LGMD2I) European Patient Day on Saturday May 25th 2024 at Double Tree by Hilton, Amsterdam, The Netherlands.
The conference will provide an opportunity to listen and speak to experts in the field, discuss your shared experiences of LGMDR9 and make new acquaintances.
The conference will be held on Saturday 25th May 2024 at Double Tree by Hilton, Amsterdam Centraal Station, The Netherlands.
This event is a gathering of individuals affected by limb girdle muscular dystrophy type R9/2I (LGMDR9/LGMD2I), including patients, their families and clinical experts, to meet, share experiences and learn about progress in research and clinical trials.
This in-person event is open to individuals in the LGMDR9 community living in Europe and the United Kingdom. Recordings will be available after the event to share with the wider global community.
The LGMDR9 Community Day is free to attend and will include refreshments and dinner. The cost of hotel accommodation is not included. DoubleTree has reserved rooms for this event at a reduced rate. Booking details will be shared after completion of the Expression of Interest form.
Expression of Interest form: https://forms.office.com/e/FbBhEfuE6m
If you would like to attend the Community Day in person, please complete this form to express your interest. The organizing team will review requests and confirm registration as soon as possible. Please wait for confirmation before making travel arrangements.
Please see a summary of the draft conference agenda below.
European LGMDR9 Community Conference – Agenda
Morning: Short presentations & discussions
· Welcome and Keynote: Overview of LGMDR9
· Introduction to the Patient Panel
· Patient registries
· Physiotherapy presentation
· Respiratory involvement and management
· Cardio involvement and management
· How do clinical trials work?
· Clinical trial updates
· Clinical trial readiness – scientific research update
· Natural History studies
Afternoon: Patient-led breakout sessions
Group 1: Parents with young children
Group 2: Teenagers & young adults
Group 3: Older adults
Session 1
Strategies for school
Mental health
Healthcare management
Session 2
Healthcare management & problem solving
Strategies for school and college
Managing work
Plenary session: Ask the expert panel Q & A
Closure and thanks
Evening: Conference Dinner
