Tetiana Zamorska
Co-founder and Executive director of the Foundation

Tetiana is a lawyer with more than 18 years of successful professional career in multinational audit and consultancy firms. Her life changed with the birth of her son Andrey in 2002 with rare genetic skin and tissue disorder called Epidermolysis Bullosa (so-called "Butterfly children" for their extremely fragile skin and tissue). Since then Tetiana has been running her patient advocacy and charitable activities.

In 2011 she founded and headed the DEBRA UKRAINE Patient Care Unit for EB Patients as part of the International NGO "Dermatologists for Children".

In 2014 she co-founded the Rare Diseases of Ukraine NGO with her colleagues who are also Moms of children with various rare diseases. The RD Ukraine is the national alliance at EURORDIS.

Tetiana is a EUPATI fellow. In 2015-2016 she studied the course "Medicines Research and Development" at EUPATI and became a qualified patient expert.

In 2019 she led the Charitable Foundation "Orphanni Synytsi" which supports Ukrainian people living with rare diseases.

For many years she has been advocating for orphan patients' rights and conducting various advocacy trainings.

In 2020 she launched the Orphan Help Line together with her colleagues to provide information and consultancy, legal and psychological support to patients with rare diseases of Ukraine.

Tetiana participates in annual international and European conferences on rare diseases, including those organized by EURORDIS.

She is a member of the Working Group at the Ministry of Health of Ukraine dealing with procurement for EB patients and development of standards of care for EB. Maintains strong ties and cooperation with clinical experts, manufacturers of medicines and medical devices, business associations and socially responsible businesses.

"Over 18 years I have been helping my son to live and survive with a devastating rare disease calle Epidermolysis Bullosa. For more than 10 years I have been taking care about all Butterfly Children of Ukraine. Meeting families with other rare (orphan) diseases provided that rare diseases are different but the problems are the same for all patients. Only together we can win, we - all families living with rare diseases. I am dreaming about a cure from all rare diseases which will be one day, but for now I wish and struggle so that all patients with orphan diseases of Ukraine have access to medicines and medical and social care, and enjoy long and happy life. "