About Charitable Foundation “Orphanni Synytsi”
The CF “Orphanni Synytsi” (in English – “rare birds”) was founded in 2018 to support people living with rare (orphan) diseases in Ukraine with life-saving medicines and medical care; advocate for their rights to treatment; draw attention of socially responsible business to the problems of rare disease patients anf raise public awareness about rare diseases.
The founders of the Foundation are heads of Ukrainian NGOs (members of Eurordis) that defend the rights of rare diseases patients to a high-quality life and access to treatment.
These are the National Alliance NGO “Rare Diseases of Ukraine” and its members Debra Ukraine, Ukrainian Association of Help for People with Cystic Fibrosis, Ukrainian Association of Patients with Pulmonary Hypertension.
In close partnership with the NGO “Rare Diseases of Ukraine” we implement joint projects for the Rare Disease Day (conferences, illumination campaigns, awareness campaigns in social media).
The video on the illumination campaign in Ukraine in 2021 https://www.facebook.com/orphannisynytsi/posts/pfbid022GvCrRCVuaCqz2762XECz3ZUoCcEq1cAMBjtqhkxc9k2TWLrvZiQ9ZRfzEzB5JhQl
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