The ERN-RND ePAG group welcomes a new patient advocate representing the DG Chorea & Huntington’s disease: Nataliya Grigorova from Bulgaria! She represents the Bulgarian Huntington Association.
Here is an introduction by Nataliya:
“I’m Nataliya Grigorova, I’m a 35-year-old Bulgarian native. I live in Sofia and I have a 4-year-old son. I have a master’s degree in Clinical psychology and I am currently specializing in ‘Health Management and Public Health’. I have worked with people with rare diseases since 2013. In 2014 I met a family affected by Huntington’s Disease (HD), at which point I really focused my professional career in the field of rare diseases. I was part of the core group which established the Bulgarian Huntington Association in 2014, with a common vision to improve the life and predicament of people affected by HD in Bulgaria. We started working on various social projects aimed at providing support to people affected by HD. We provide free consultations, physiotherapy and support for the families of people with HD and many other rare diseases. Our latest project is EmpoweRARE (www.empowerare.eu) and we are also working on establishing the first ever Day Care Center for people with rare diseases in Bulgaria.
My motivation for joining the ERN-RND is to be part of the network, collaborating, sharing and learning from the experience of others and therefore providing the best possible knowledge and support for the Bulgarian families affected by HD and other rare neurological diseases. At the same time I feel I would make a valuable addition to the ERN-RND by contributing the experience I have gathered in efforts aimed at empowering people with rare neurological diseases and I can also offer fresh insight on what it is to be working in this sector in an Eastern European country, along with the many challenges people with rare neurological diseases face in Bulgaria.”
Welcome, Nataliya and we look forward to working together!