Description
How can we change the lives of people with a rare disease?
And what role can patient organisations play in this?
Doctors, patients themselves and representatives of the non-profit sector will discuss this. We will bring it all online to the world via YouTube: https://youtu.be/EnjPSl7tpeo
and also Facebook: https://fb.me/e/1y9AvMcmi
Discussants:
MUDr. Hana Bučková, PhD. – founder of the EB Centre of the Czech Republic and DEBRA Czech Republic, co-founder of the EB-Clinet professional network
Mgr. MUDr. Renata Gaillyová, PhD. – clinical geneticist of the EB Center of the Czech Republic, Expert Guarantor of the Czech Association for Rare Diseases
Kateřina Vlastová – patient with a severe form of EB
Tatiana Plecháčková – Director of the Civil Society Development Foundation
Magda Hrudková – Founder of DEBRA ČR
Images
