Event

17 Jan 2020
When:
Fri 17 January, 2020
Location
Hlyboka 12
Lviv
Ukraine
2020 events in Ukraine
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We have started #orphanbell
10 Jan 2020 Lviv
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Patients with different
17 Jan 2020 Lviv
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In the frame of  Rare Disease
01 Feb 2020 - 29 Feb 2020 Lviv
Ukraine

Christmas Debates 17 January 2020 Hlyboka 12, Lviv, Ukraine
+380971510901
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!!!

News:

https://galinfo.com.ua/news/orfannyy_dzvin_sklykaie_patsiientiv_na_rizdvyani_debaty_335262.html

https://zaxid.net/orfanniy_dzvin_sklikaye_patsiyentiv_na_rizdvyani_debati_v_ramkah_vidznachennya_mizhnarodnogo_dnya_ridkisnih_zahvoryuvan_n1496117

https://vgolos.com.ua/announces/orfannyj-dzvin-sklykaye-patsiyentiv-na-rizdvyani-debaty-v-ramkah-vidznachennya-mizhnarodnogo-dnya-ridkisnyh-zahvoryuvan_1150127.html

https://city-adm.lviv.ua/news/society/social-sphere/275045-v-ramkakh-vidznachennia-mizhnarodnoho-dnia-ridkisnykh-zakhvoriuvan-u-lvovi-vidbudutsia-rizdviani-debaty

Video: https://www.youtube.com/watch?v=dF42Xo0lfZI&fbclid=IwAR0Id5sDlAR3qEQX4cKDJVfeSMamD0gkkvuFHlnHxiq-lAc2xFcR2B69HrA

 

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