TANDem Impact Event 2022: Conversations About Tuberous Sclerosis Complex
The TAND consortium hosted a TANDem Impact Event at the Stellenbosch Institute for Advanced Study (STIAS) on 5 November 2022. This allowed the international group of experts in the TAND consortium to meet with local families, clinicians and researchers to present up-to-date information on TSC, TAND, the TANDem project, and discuss issues of local interest to participants in round-table discussions.
The first half of this stimulating morning consisted of a series of presentations, opening with a moving personal journey presented by Alexis Minnaar, a young South African adult with TSC. This was followed by an introduction to TSC and the international guidelines for diagnosis, monitoring, and treatment of TSC by Dr Darcy Krueger (USA). Ms Annemie T’Seyen from the King Baudouin Foundation described the participatory process adopted by the TANDem project and this was followed by a description of TAND and the TANDem project by Prof Anna Jansen (Belgium). Short presentations on each of the TAND clusters by members of the TAND consortium ended the first part of the morning. After a tea break, participants took part in three round-table discussions that focussed on steps to starting a support organisation, educational needs for learners with TSC, and current pharmacological treatments for TSC. The morning closed with feedback on these discussions to the whole group and a sumptuous lunch.