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.

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.

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.

This document was created with the financial support of the Active Citizens Fund in Bulgaria under the Financial Mechanism of the European Economic Area.

The sole responsibility for the content of the document lies with the Bulgarian Huntington Association and under no circumstances can it be assumed that this document reflects the official opinion of the Financial Mechanism of the European Economic Area and the Operator of the Active Citizens Fund in Bulgaria.