BundeSciencia – Rare Diseases
Date and time
Location
Online event
The Society of Spanish Researchers in Germany (CERFA) in Berlin-Brandenburg invites you to our next BundeSciencia ScienceCafe: Rare Diseases
About this event
The Society of Spanish Researchers in Germany (CERFA) in Berlin-Brandenburg have the pleasure to invite you to the next BundeSciencia – Rare Diseases, which will take place on Tuesday, 22nd of March at 18:30h CET on Zoom.
Join us and our invited speakers, from the national alliance for chronic rare diseases Germany (ACHSE), academia & private sector:
Dr. Christine Mundlos from the national alliance for chronic rare diseases Germany (ACHSE) will give a short summary on the history and activities of ACHSE, on the joined effort of the public health sector to improve the health and living situation of affected people and an outlook to what we expect/need. „Strong together – patient’s involvement in rare diseases“
Dr. Beatriz Blanco Redondo junior group lead at the University of Leipzig will talk to us about “ALS (Amyotrophic Lateral Sclerosis): the search for a cure”
Dr. Inés Fernández Ulibarri from IQVIA and Dr. Sabrina Rivero Canalejo from the University of Seville, will explain us in which consist the Kleefstra syndrome, and the use of precision medicine to find potential treatments for this syndrome and similar rare neurodevelopmental disorders.“Precision Medicine to Treat Rare Neurodevelopmental Disorders”.
There is an urgent need to establish the foundations, the knowledge, the tools and necessary skills to treat – not just one patient or group of patients, not just one syndrome but many other rare genetic diseases. These diseases affect 7% of the world’s population according to the WHO (World Health Organization) and most of them lack specific treatment. To maximize the potential of precision medicine, it requires a close collaboration between families, clinicians and R&D professionals.
This event is supported by Fundación Ramón Areces, ACHSE (Allianz Chronischer Seltener Erkrankungen), Spanish Embassy Berlin (Science & Cultural Department), Instituto Cervantes Berlin, UniSysCat – TU Berlin, COSMO radio (rbb) and Berlin Amateurs.
We are looking forward to seeing you there (Zoom)!