17 January 2020
Hlyboka 12, Lviv, Ukraine
Hosted by CF "Sister Dalila", PHURDA
Patients with different rare diseases(PH,cdkl5,tuberus sclerosis, Duchene Myopathy, SMA, Gaucher disease, mucopolysaccharidosis, neurofibromatosis), representatives of patient organizations, representatives of local authorities, doctors and public figures met together at the CF Sister Dalila office in order to say aloud about the challenges that orphan patients face daily. Among them there are: common register of patient with rare diseases, early diagnosis, certification of medicines, daily rehab etc. Representatives of Health Department and Social Protection Department actively participated in the discussion. According to the results of the discussion the orphan community wrote a letter of application to the Head of Lviv Regional State Administration, Lviv Regional Council, Lviv City Council expressing actual suggestions which implementation would improve the condition of patients with rare diseases in Lviv Region. Second part of the event was informal. We played special metaphoric game and had national Christmas snack. We thank everyone who joined the initiative #OrphanBell. We are stronger together!!!