In 2020 on February 28th at Lviv Regional State Administration the orphan community in Lviv organized round table “Rare Disease Day”. There joined together 7 nosologies: PH, SMA, tuberus sclerosis, mucopolysaccharidosis, Gaucher disease, Duchenne disease, CDKL 5. The joined initiative got the name “Orphan Bell”. The ambassador of Orphan Bell movement was chosen Olha Tsap, director of tv channel.
There were raised issues and challenges that rare patients face in Ukraine at the state and local levels: registries, absence or lack of medication, rehabilitation, special equipment and nutrition. We tried to outline the road map that Orphan Bell movement would follow in 2020.
We sincerely believe that it will be possible for working group “Orphan Bell” together with Lviv Regional State Administration, Lviv City Council, deputy corps, NGOs, Ukrainian Medical Society in Lviv and Public Council to improve the condition of patients with rare diseases.
To celebrate Rare Diseases Day, #orphan bell movement created a social advertisement in support of orphan patients on the streets of Lviv city: “Rare is not a sentence. We have the right to life!” More detailed information on rare diseases can be obtained by calling +380971510901. The ambassador of “Orphan Bell” is Olha Tsap. Information partner – TRK PERSHYI ZAKHIDNYI.
Join and be informed for the sake of life of every orphan patient.