Advisory Board of patients with rare diseases of the project "Empowerment of People with Rare Diseases"
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.
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.