A round table dedicated to the problems of orphan patients in the Lviv region, initiated by “Orphan Bell”, was held at Lviv Regional Council building. Representatives of orphan nosologies, representatives of local and regional authorities, the Department of Health, representatives of the medical field and charitable foundations took part in the discussion.
Thanks to the “live” dialogue, the difficulties of each nosology, the possible ways to solve them, and the necessary development were voiced.
At the end of the Round Table near the Lviv City Council, there was a solemn opening of the photo exhibition “Invisible Heroes”. There were presented the pictures of children with rare diseases whose eyes reflected the daily struggle for their lives and an irresistible desire to live!
And a banner in support of orphan patients, which flew on the walls of the Lviv City Council, was a wonderful ending.
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.
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