The Wife of the President, Elizabeta Gjorgievska, participated today and addressed two events on the occasion of the Rare Disease Day, with the aim of raising public awareness of the challenges and needs of people with rare diseases.
At the event organized by all associations for rare diseases under the umbrella of the National Alliance for Rare Diseases of the Republic of North Macedonia, Ms. Gjorgievska said that people with rare diseases face common challenges and issues, among which are the expensive diagnosis and therapy for the statistically small number of patients which contributes to their being almost invisible to the system in the creation of public policies and planning of state budgets in many countries.
“Fighting for universal and equal access to quality health services with an eased financial burden, you do not seek for privileges, but justice. Instead of an exception for rare diseases, you ask no one to be excluded from the health system, and thus you contribute to the common good”, Ms. Gjorgievska said, adding that all this makes them partners of the state, and good health policies depend on the contribution of associations which have the necessary information, knowledge and experience. She added that the inestimable value of each person obliges us to treat people with rare diseases as equal citizens with equal rights and equal access to timely and accurate diagnosis, effective therapy and support for people with a rare disease and their families.
Speakers at the discussion were the Minister of Labor and Social Policy, Jovana Trenchevska, Aspazija Sofianova, President of the Commission for Rare Diseases, Diana Plasheska, representative of MANU, Rebeka Jankovska, from the Alliance for Rare Diseases, Gordana Loleska, from the Campaign for Rare Diseases and Josif Mishevski, a patient with ichthyosis. The event also featured artwork by patients, children and artists for rare disease patients, as well as rare disease stamps along with a new stamp dedicated to ichthyosis.
At the event titled “Will patients with rare diseases be left without therapy?”, which was held at the “Europe House”, organized by the young European ambassador Irena Shumenkovska, the Wife of the President referred to the challenges faced by these patients and the need for universal health care and equal access to medicines for all regardless of the price of medicines. She added that despite the challenges we face as a society, with the full completion of the national strategy, and even more with the adoption of the action plan on how the national strategy will be implemented, much more will be achieved.
The event was addressed by the Head of the EU Delegation in Skopje, Ambassador David Geer, Dr. Nikola Gjorgievski from PHI “University Clinic for Nephrology”, Dr. Nora Abazi from PHI “Clinic for Children’s Diseases”, Dr. Daniel Jankoski from PHI “University Clinic for Digestive Surgery”, Dr. Bojan Trajkovski from PHI “Medica Vera” and Dr. Anastasia Pesic from “Center for Information Medicine”.