“Rare Diseases & Orphan Drugs” – issue 16

June edition of “Rare Diseases & Orphan Drugs” is now published on our website. It is introducing “Cystic Fibrosis – Let’s Add Life” – a campaign of the Bulgarian Cystic Fibrosis Patient Association for the adoption and implementation in Bulgaria of the so-called European consensus standard for the treatment of this rare disease. You can find more over about the European project BURQOL-RD, that aims assessing the socio-economic burden and health-related quality of life in patients with rare diseases, as well as you can read useful information about hereditary spastic paraplegia. Have nice minutes with “Rare Diseases & Orphan Drugs”.