Advisory Board of patients with rare diseases of the project "Empowerment of People with Rare Diseases"
Boryana Stoyanova - Board of Directors member of National Association of Patients with Mitochondrial Diseases
Boryana Stoyanova graduated Law at Sofia University "St. Kliment Ohridski ”, works as a lawyer in commercial and corporate law and has over 20 years of experience. Married, with 2 children, one of whom has a very rare mitochondrial disease.
Co-founder and member of the Board of Directors of the National Association of Patients with Mitochondrial Diseases, established in December 2019. Through her participation in the association Boryana has contributed to:
• Membership of the association in the international organization International Mito Patients since 2020
• Membership of the association in the National Patient Organization since 2021
• First participation in 2021 of the association in the international initiative Light up for Mito (lighting of public buildings in green color in support of patients with mitochondrial diseases)
• Participation of the association in international conferences and webinars
Lila Angelova - founder of Turner Syndrome Bulgaria
Lila was born in Sofia and grew up during the turbulent years of the new democracy. She would like to live in a fairer and more beautiful world where there is room for everyone. She has been in India for many years and practices yoga. She is the founder of the Facebook support group for parents of children and women with Turner Syndrome, and in her spare time she actively tries to support, provide accessible information and better medical care for people with rare diseases. She has worked in the non-governmental sector, participating in lifelong learning opportunities programs. Lila is a lecturer in the training for empowerment on the topic of employment of people with disabilities.
Maya Hristova - mother of a child with a rare disease
Maya Hristova is a specialist in public finance, but in 2012 her daughter Sylvia was diagnosed with post-vaccine immune deficiency and secondary immune thrombocytopenia, a rare immune disease acquired after vaccination. This puts her in an unequal struggle with institutions and legislation in an effort to provide a better life and opportunities for her daughter's development. Maya is actively involved in activities concerning the rights of children with disabilities in Bulgaria, and in recent years has been fully dedicated to the care of her child and is a personal assistant to her daughter Sylvia.
Monika Marinova - founder of Association of Tarlow Patients in Bulgaria
Monika Marinova is from Stara Zagora. Married with two daughters. Patient with Tarlow's perineural cysts. She was successfully operated in 2015 in Cyprus. After many troubles and obstacles as a patient, in early 2019 she founded the Association of Tarlow Patients in Bulgaria - Treatment without Borders. Besides being the founder, she is also the chairman of the association. "I dreamed of having someone to protect the rights of patients with the rare disease Perineural cysts of Tarlov in Bulgaria and so the idea for the creation of our Association was born. This is the mission of my life. That is my calling."
Since the association was founded, there have been many initiatives to spread awareness. Such as:
- First National Congress on the Rare Disease "Perineural Cysts of Tarlov", Co-organizer Municipality of Stara Zagora
- Publication of the first book in Bulgaria on the rare disease "Perineural cysts of Tarlov", "Trajectories of suffering and pain"
- Seminar for mutual assistance for patients with Tarlov's cysts with a psychotherapist
- The first informational video in Bulgaria about Tarlov's Cysts, a joint initiative with the Municipality of Stara Zagora
- Seminar for patients with Dr. Stoycheva on "Perivenural cysts of Tarlov" Challenge in diagnostic imaging
- Seminar with a psychologist on "Talking about coping" What is it like to live with a rare disease
- Celebrating the International Day of Rare Diseases in Stara Zagora, three consecutive years
- Participation as a lecturer in the XI National Conference on Rare Diseases and Orphan Drugs, hosted by the Institute of Rare Diseases. The topic of the lecture was "An unknown rare disease - Tarlov's perineural cysts"
- Submission of documents to the Committee on Rare Diseases for recognition of the disease as rare in Bulgaria
- Many meetings and correspondence with institutions
- Seminar for patients with a psychologist on the topic of psychological support "Change from the inside out"
- Presentation of the association and the disease to the Members of the National Alliance of People with Rare Diseases