{"id":3097,"date":"2020-07-29T07:08:46","date_gmt":"2020-07-29T07:08:46","guid":{"rendered":"https:\/\/startersites.io\/blocksy\/blog\/?page_id=3097"},"modified":"2025-09-29T22:39:55","modified_gmt":"2025-09-29T20:39:55","slug":"about","status":"publish","type":"page","link":"https:\/\/zdruzenienaretkibolesti.mk\/en\/about\/","title":{"rendered":"About Us"},"content":{"rendered":"
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Macedonian Society for Rare Diseases<\/b><\/h1>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Founding<\/b><\/h4>

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\u041c\u0435\u0441\u0442\u043e<\/strong>: \u0421\u043a\u043e\u043f\u0458\u0435<\/span><\/p>

Contact<\/b><\/h4>

Prof. Dr. Zoran Gucev \u2013 President<\/span><\/p>

Prof. Dr. Velibor Tasic\u2013 Vice President<\/span><\/p>

Prof. Dr. Aleksandra Jancevska \u2013 Secretary<\/span><\/p>

Address<\/strong>: \u041a\u043b\u0438\u043d\u0438\u043a\u0430 \u0437\u0430 \u0434\u0435\u0442\u0441\u043a\u0438 \u0431\u043e\u043b\u0435\u0441\u0442\u0438, \u0412\u043e\u0434\u045a\u0430\u043d\u0441\u043a\u0430 17, 1000 \u0421\u043a\u043e\u043f\u0458\u0435<\/span><\/p>

President<\/b>\u00a0<\/span><\/h4>

Prof. Dr. Zoran Gucev \u2013 year 2014<\/span><\/p>

Number of members<\/b>: <\/span> 450<\/strong><\/h5>

Membership and cooperation with other associations<\/b><\/h4>
  • Macedonian Medical Association,\u00a0<\/span><\/li>
  • Associations for rare diseases from Croatia,<\/span> Serbia, Bulgaria, England, Poland,<\/span><\/li>
  • Macedonian Society for Human Genetics,<\/span><\/li>
  • National Organization for Rare Diseases \u2013 Skopje,<\/span><\/li>
  • Association of Patients with Rare Diseases \u201cLife with Challenges\u201d, Skopje \u2013 President Vesna Aleksovska,\u00a0<\/span><\/li>
  • Association of patients with rare diseases from the Ohrid-Struga region \u201cIt is rare to be rare\u201d \u2013 President Gordana Lolevska,<\/span><\/li>
  • International Pediatric Nephrology Association (IPNA),<\/span><\/li><\/ul>

    Congresses<\/b><\/h4>
    • 1<\/span>st<\/span> to 9<\/span>th<\/span> Congress of Rare Diseases in Southeast Europe \u2013 held in Ohrid, Struga and Skopje \u2013 from 2011 to 2023,<\/span><\/li>
    • Second Balkan Meeting on Alport Syndrome \u2013 Ohrid, 2022,<\/span><\/li>
    • 14<\/span>th <\/span>Balkan Congress of Human Genetics \u2013 Skopje, 2023,<\/span><\/li>
    • 10<\/span>th<\/span> Rare Disease Congress in Southeast Europe \u2013 planned for October 2025,<\/span><\/li><\/ul>

      Webinars<\/b><\/h4>
      • Experiences with rare nephrological diseases \u2013 2020,<\/span><\/li>
      • Rare diseases in nephrology \u2013 2021,<\/span><\/li><\/ul>

        Schools, workshops, symposiums<\/b><\/h4>
        • IPNA Teaching course \u2013 in the field of rare nephrological diseases, in collaboration with the International Pediatric Nephrology Association \u2013 2023.<\/span><\/li>
        • IPNA Teaching course \u2013 in the field of rare nephrological diseases, in collaboration with the International Pediatric Nephrology Association \u2013 2024.<\/span><\/li><\/ul>

          Publications<\/b><\/h4>
          • Author: Zoran Gucev, co-authors Velibor Tasic, Aleksandra Jancevska and Ardijana Beqiri: <\/span>Pediatric Diabetology<\/b>. Skopje 2021.<\/span><\/li>
          • Author: Zoran Gucev, co-authors A. Jancevska and Ardijana Beqiri: <\/span>Mucopolysaccharidoses<\/b>. Skopje 2022<\/span>.<\/b><\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"

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