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On February 26, 2015 the Representatives of LCCF of "Sister Dalila" Took Part in Public Сampaign "Orphan but not Powerless! " in Kyiv by the Cabinet of Ministers of Ukraine
27/02/2015

       On February 26, 2015 the representatives  of LCCF of "Sister Dalila"  took part in public campaign "Orphan but not Powerless! A hand of Help" " in Kyiv by the Cabinet of Ministers of Ukraine, the organizer of which was the Public Union “Orphan Diseases of Ukraine” The given campaign was dedicated to the International Day of Rare Diseases, in February 28, 2015 p., and was intended to draw the attention of officials of the Cabinet of Ministers of Ukraine to the problems of patients with rare diseases.

       During this event the  representatives of Public Union "Orphan Diseases of Ukraine" handed over an open letter to the Prime Minister of Ukraine Mr. Yatsenyuk with specific proposals to promote access to treatment and financial support to orphan patients.

       After the press-area there was run a press conference - "Orphan but not powerless, Access to treatment for patients with rare in Ukraine" which took place in hotel "Kyiv". The main speakers were: the Deputy of Minister of Health of Ukraine Aljona Tereshchenko; the head of the sector on the state registration of Ministry of Health of Ukraine - Taras Lyaskovskiy; the Deputy of the head doctor of the National Children`s Specialized Hospital "Ohmadet" - Elena Meshkova; the partner of the law firm, the Head of Health & Pharmaceutical - Lana Sinichkina; the Head of Metabolic Center at the National Children`s Specialized Hospital "Ohmadet" - Natalia Pichkur;  the professor, fertility-doctor Vladislav Feskov;  the partner of a law firm, the head of practice of resolution of disputes - Tatyana Kuzmenko; the member of the Public Union of  "Orphan Diseases of  Ukraine" - Tatyana Zamorska. The press conference was run in a form of questions and answers between representatives of patient organizations, orphan patients  and officials.

         Apart from this, LCCF of “Sister Dalila” had a great opportunity to meet with some of our patients.

        Such conferences with the participation of  orphan patients and  patient organizations, are an essential element in drawing attention of officials and the public to the problems of  orphan patients because they are "Orphan but not powerless."

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