Valentin Rusinov

I was diagnosed with a rare disease after seven years of unsuccessful treatment.

We, people with rare diseases, are “invisible”, and not because we do not want to go outside and be among other people, but because of the challenges we face that prevent us, in our wheelchairs, from doing so.

I have a duty to my children because I know that one of them is a carrier of the gene. My hope is that with the innovative drug therapy currently available and when the needed shift in attitudes within society and the government happens, nobody will have to go through what I went through.

According to WHO’s data, one in twenty people in Bulgaria has a rare disease.^[1][2][3] Hence, the information campaign dedicated to the struggle of rare disease patients to get a timely diagnosis and treatment is called “The 20th Hero”. The campaign is a joint effort of the National Alliance of People with Rare Diseases and Takeda, a biopharmaceutical company. One of the heroes is Valentin Rusinov, a patient with FAP.

^[1] National Alliance of People with Rare Diseases: https://rare-bg.com/?page_id=17

^[2] Nguengang Wakap, S., Lambert, D.M., Olry, A. et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet 28, 165–173 (2020). https://doi.org/10.1038/s41431-019-0508-0

^[3] Rare Disease Day Information Pack. EURORDIS Rare Disease Day Website. http://download2.rarediseaseday.org/2020/infopack-2020.pdf. Accessed on December 9, 2019.