10 Jan 2020
Fri 10 January, 2020
2020 events in Ukraine
We have started #orphanbell
10 Jan 2020 Lviv
Patients with different
17 Jan 2020 Lviv
In the frame of  Rare Disease
01 Feb 2020 - 29 Feb 2020 Lviv

Photo shoot with participation of patients with rare diseases 10 January 2020 Lviv, Ukraine
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. 

news program about photo shoot


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