Saturday program

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.