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 Tarlov Patients in Bulgaria
Monika Marinova is a patient with Tarlov's Perineural Cysts. She is from Stara Zagora and is married and has two daughters. She underwent surgery for her illness successfully in 2015 in Cyprus. After many troubles and obstacles as a patient, in early 2019 she founded the Association of Tarlov 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's my calling," says Monica.
Since the establishment of the association, Monica has implemented many initiatives to unite patients, inform the public and is in constant correspondence with institutions in Bulgaria. The association organized the First National Congress on the Rare Disease "Perineural Cysts of Tarlov", published the first book in Bulgaria on the rare disease Perineural Cysts of Tarlov - Trajectories of Suffering and Pain, organized a seminar for mutual assistance for patients with Tarlov's Cysts with psychotherapists .
liana Tonova - President of the National Sarcoidosis Association
Iliana was born in Sofia and has been facing the problems people with rare diseases and disabilities face personally for 14 years. In an effort to help friends, acquaintances - people with disabilities, some of them with rare diseases, she tries to find out about the changes to the Ordinance on the Medical Expertise, in order to be aware of the current situation. She participated in proposals for changes in the Ordinance, which were adopted and included in it. Iliana is actively involved in the advocacy campaign of the project, advising and guiding people with rare diseases on issues related to the procedure for the acquisition of TEMC and is a lecturer in the training for empowerment provided by the project.
Desislava Dimitrova - Member of the Board of the Bulgarian Huntington Association
Desislava was born in Sofia, has two children, whom she takes care of, and also works and is an active advocate for the rights of people with rare diseases and disabilities. She is an extremely strong and combative person, as her younger son was born with a heart defect, due to which he underwent a number of risky operations. Desislava goes through the ordeal, as she herself is affected by a rare disease and takes care of her children holding her head high, finding time to defend a number of civic causes. Desislava is also a lecturer in the trainings for empowerment provided by the project, on the topic of the rights of children with disabilities in Bulgaria.