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Seminář o vzácných onemocněních: příběhy pacientů a naděje ve vědě
A seminar about rare diseases: stories of patients and hope in science
Location: Mendeluv sklenik, Mendlovo náměstí 1a, Brno-střed
Tickets: Get tickets
Talks & discussions
About event
🧩💡📚 Multi -disciplinary seminar for the general public interested in research in medicine, special pedagogy, social work and human stories full of support and hope
The event is organized University Hospital Brno and 🫛🟢 Spolly o. P.
in cooperation with 🦋Debra ČR, Creatic, 👐čavo, 🇨🇿 National Coordination Center for Rare Diseases Motol Prague.
💬o of rare diseases will be lectured and discussed, among other things, doctors from the University Hospital Brno, Motol University Hospital, University Hospital Brno, VFN and representatives of organizations for Julie, Center for Winding, Smaks, Cystic Fibrosis Club and MU.
🆓 Invites on the event is free. Due to limited capacity it is necessary to book a place on the following link: https://forms.gle/pic9qmtdiaPa8zcr8 > 👕👖 The greenhouse is drowning, but it is not "like in a greenhouse", there will be just right there 🙂
We look forward to seeing!
__________________________________________ina MU, the head of the Institute of Medical Genetics and Genomics and the head of the Center for Molecular Biology and Genetics IHOK MU and the University Hospital Brno
M. MACEK, Head of ÚBLG 1. Faculty of Medicine and University Hospital Motol and National Coordination Center for Rare Diseases in Motol University Hospital
● What is going to, "no one rare is left aside"
A. ARELANESOVÁ, R. ivy, Czech Association for Rare Diseases
● Rare diseases
R. Gailly, organizer and clinical geneticist ÚLGG LF MU and University Hospital Brno
● Neonatal laboratory screening - tool for searching for selected serious rare diseases
H. Vinohradská, Excome of the University Hospital Brno, K. Pešková, KLDD VFN Prague
● Spinal muscle atrophy and therapy
P. Danhofer, KDN FN Brno
● Immunodeficiency - What brings us newborn screening scid
E. Hlaváčková, ÚKIA University of University Hospital Brno
● Creatic: "Patients like Hyben Innovation In the treatment of rare diseases"
L. Součková
Break
● Discussion: "So that no one is rare aside" (17:00) Cystic fibrosis, early care, smacks, special pedagogy Ped Muni and Lucie Kupsová
The event is organized University Hospital Brno and 🫛🟢 Spolly o. P.
in cooperation with 🦋Debra ČR, Creatic, 👐čavo, 🇨🇿 National Coordination Center for Rare Diseases Motol Prague.
💬o of rare diseases will be lectured and discussed, among other things, doctors from the University Hospital Brno, Motol University Hospital, University Hospital Brno, VFN and representatives of organizations for Julie, Center for Winding, Smaks, Cystic Fibrosis Club and MU.
🆓 Invites on the event is free. Due to limited capacity it is necessary to book a place on the following link: https://forms.gle/pic9qmtdiaPa8zcr8 > 👕👖 The greenhouse is drowning, but it is not "like in a greenhouse", there will be just right there 🙂
We look forward to seeing!
__________________________________________ina MU, the head of the Institute of Medical Genetics and Genomics and the head of the Center for Molecular Biology and Genetics IHOK MU and the University Hospital Brno
M. MACEK, Head of ÚBLG 1. Faculty of Medicine and University Hospital Motol and National Coordination Center for Rare Diseases in Motol University Hospital
● What is going to, "no one rare is left aside"
A. ARELANESOVÁ, R. ivy, Czech Association for Rare Diseases
● Rare diseases
R. Gailly, organizer and clinical geneticist ÚLGG LF MU and University Hospital Brno
● Neonatal laboratory screening - tool for searching for selected serious rare diseases
H. Vinohradská, Excome of the University Hospital Brno, K. Pešková, KLDD VFN Prague
● Spinal muscle atrophy and therapy
P. Danhofer, KDN FN Brno
● Immunodeficiency - What brings us newborn screening scid
E. Hlaváčková, ÚKIA University of University Hospital Brno
● Creatic: "Patients like Hyben Innovation In the treatment of rare diseases"
L. Součková
Break
● Discussion: "So that no one is rare aside" (17:00) Cystic fibrosis, early care, smacks, special pedagogy Ped Muni and Lucie Kupsová