Saturday 28th Programme
The Saturday programme will be fully focused on patients and their needs. Based on a patient and family survey, we identified key questions they would like addressed during the meeting. Each expert-presentation will start with a short video of a patient asking a question, which will serve as the basis for the presentation. All sessions will be recorded and live-streamed, with real-time translation available so patients worldwide can follow in their own language. Patients will also be able to ask questions via chat. Anna Sarkozy has been invited to moderate the session, and all recordings will be available online afterwards.
The day begins with a welcome and practical information, followed by a short presentation on what is happening around the world in the field of Lama2-RD. This is followed by a series of inspiring contributions with personal stories and various scientific presentations by international experts.
For off-site participants, we will offer an engaging online experience, with the presentations streamed live through professional camera work. Online visitors can ask questions via chat.
Each presentation will begin with a short video in which a patient or parent poses a question, followed by the expert’s explanation.
After lunch, the programme continues with a personal story, practical advice, and an inspiring speech by an adult patient. In addition, a new brochure and a podcast will be presented. After a coffee brake the time is mainly devoted to meetings, which we do through round-table discussions in which patients and experts engage in conversation with each other in an open setting. Then, the children will be performing a circus act, which they will work on throughout the day.
The day will conclude with a joint dinner and evening programme in Istanbul, where participants can continue to network and exchange experiences. The round-table discussions and evening program will be accessible only to those attending in person.
Bram Verbrugge (Voor Sara Chairman and LAMA2 Europe founder) and his family.
Session 4: Patients and their needs
Welcome and practical information about the day - Haluk Topaloğlu, Bert Smeets, Bram Verbrugge
9:00-9:10
Presentation world map - Bram Verbrugge
9:10- 9:20
LAMA2-RD – expectations and treatments - Alberto Zambon
9:20- 9:45
Physiotherapy for LAMA2 patients - Eric Voorn
9:45- 10:10
Personal story - Shruti Aggarwal Gupta
10:10- 10:25
Psychosocial issues - Marloes van Lieshout and Sandra Altena-Rensen
10:25 - 10:50
Coffee break
10:50 - 11:20
Personal story - Bram Verbrugge
11:20 - 11:40
Patient registry - Gustavo Dziewczapolski
11:40 - 11:50
Patient care guidelines - Anna Sarkozy, Alberto Zambon, Bram Verbrugge
11:50 - 12:00
Practical advice - Clara Gontijo Camelo
12:00 - 12:25
Personal story -Justin Moy
12:25 - 12:45
Lunch
12:45 - 13:45
Science and research - Madeleine Durbeej-Hjalt
13:45 - 14:10
Science and patients - Stefano Previtali
14:10 - 14:35
Launch of the LAMA2 Forum, patient brochure and podcast - Bram Verbrugge, Honours Students Maastricht University
14:35- 14:50
Coffee break (at round tables)
14:50 - 15:20
Round table questions, answers and discussions between patients and experts (drinks served)
15:20 - 17:20
Circus act performance by the children
17:20 - 17:40
Photo moment for all participants
17:40 - 18:00
Break
18:00 - 19:30
Departure to the boat from the lobby of Somerset Hotel (Maslak 1453 Sogut Sok No20aa C15)
19:30
Boat dinner and party
20:00 - 22:30