Photo shoot with participation of patients with rare diseases
10 January 2020
Hosted by CF Sister Dalila, PHURDA
We have started #orphanbell movement in Ukraine. A lot of rare diseases do not get proper support. We initiated Orphan bell to bring togather and unite differnt nosologies to sound louder, to become stronger, to help each other, to learn from each other.
We decided to start with photo shoot that would continue as a social media campaign in support of rare diseases. Photo shoot united patients with rare diseases and well-known people to spread information about rare and to reframe rare. Rare patients in Ukraine want to be heared, they want to visible. Among well-known people we chose one who will be Ambassador of rare patients 2020 - Olha Tsap. She is a director of tv channel and she kindly agreed to take this important mission.