Programme patient day

8,30=9,30        Registration

9,30-9,45        Kelly Verbruggen (ADNP Europe)

                        Welcome to the families and itroduction

9,45-10,15    Antoine Bourgoinie (ADNP Europe)

                        What can the ADNP Europe association mean for you?

10,15-10,45    Dr. Claudio D'Incal (UA/UZA)

                        Update on the clinical presentation of the Helsmoortel - Van der Aa syndrome

10,45-11,00    Lusine Harutyunyan (UA/UZA)

                        Update on the Helsmoortel - Van der Aa syndrome are pathway and ongoing clinical studies

11,00-11,30    Coffee break

11,30-12,00    Jolijn Verseput (Radboudumc, Nijmegen, the Netherlands)

                        Natural history for Helsmoortel - Van der Aa syndrome and 3D facial imaging

12,30-12,30    Prof.Dr. Michelina Armando (Ospedale Pediatrico Bambino Gesù, Rome, Italy)

                        Physiotherapy for the Helsmoortel - Van der Aa syndrome

12,30-13,30    Lunch

13,30-13,45    ADNP Network of hopt (USA)

                        A video message from the network of hope in the USA

13,45-14,15    Prof Dr. Josep Buxbaum TDC (Mount Sinai, NY, USA)

14,15-14,30    Prof. Dr. Illana Gozes (Chair Exaonavis Therapeutics, LTD, Tel Aviv, Israel)

                        Update on the Davunetide clinical trial

14,30-15,00    Tea break

15,00-15,30    Susann Simensen (Norwegian centre for rare diseases – unit Frambu, Norway)

                       A Holistic and Multidisciplinary Approach to Rare Disorders

15,30-16,00    A parental testimony

16,00-17,00    Q&A session with the ADNP Europe scientific board members

17,00-19,00    Reception and closure

Video's of the remeinder of the 2024 and the entire 2022 editions you can find on our COGNET channel, see this link.