Ladies and Gentlemen,

It was with great pleasure that I accepted the invitation to open the 3rd Conference on Rare Diseases in Southeast Europe, organized by the Macedonian Academy of Sciences and Arts and the Association for Rare Diseases "Life with Challenges".
I would like to greet the present guests, organizers and participants of this important Conference on behalf of my husband, the President of the Republic of Macedonia, Dr. Gjorge Ivanov, who wishes you a successful implementation of the Conference agenda, inspiring speeches and constructive discussions, as well as concrete initiatives for the benefit of the people with rare diseases in the Republic of Macedonia.

Respected All,

Even at the onset, I am confident that this Conference will go smoothly since it gathers together all stakeholders active in the field of rare diseases in the Republic of Macedonia. On this occasion, I praise the organizers and all participants who have supported the Conference with their presence and involvement.
First, I would like to extend my greetings to the patients with rare diseases and their families. Then, the representatives of citizens' associations, active in the field of rare diseases, research institutions, the academia, doctors and experts working in the field of rare diseases, as well as the representatives of state agencies dealing with this segment of healthcare.
Because the field of rare diseases is a small segment of the overall health care sector in a country, all concerned parties should share partner relation, which is inter-dependent, open and fair. Today, all partners in this area in the Republic of Macedonia are at one place, attending an event, which means that the rare disease community is set on a solid and unique basis. It demonstrates our unity and common commitment to promote and improve the current situation with rare diseases in the Republic of Macedonia.
In this regard, I would like to emphasize and welcome the commitment of the citizens' associations which are active in the field of rare diseases for their orchestrated actions before the other stakeholders, with their excellent example of establishing the National Alliance for Rare Diseases of the Republic of Macedonia in April this year.

Ladies and Gentlemen,

Today's forum of the Macedonian partners is complemented and enriched with the presence of prominent and distinguished internationally recognized experts, who, from the field of their expertise, will deliver presentations on rare diseases and will encourage exchange of positive experience on the possibilities of diagnosing, treatment protocols and curing rare diseases, as well as recommendations for more advanced and modern theoretical and practical achievements. I compliment all foreign participants and express my sincere gratitude to them for their involvement in the today's forum.

Respected All,

Two years in a row I have the special honor to be holder of the title European Honorary Patron of the European Organization for Rare Diseases-EURORDIS seated in Brussels. My involvement in this special and very active European organization inspired me to even greater efforts in the field of rare diseases, both at national and European level.
At national level, my commitment in raising public awareness on rare diseases is dedicated to helping and supporting one of the priorities of the National Alliance for Rare Diseases - integrated approach of all concerned parties for detection, diagnosis, particularly early diagnosis, prevention, treatment, rehabilitation and social integration of people with rare diseases and their families. I applaud and support all the efforts of the competent national institutions.
I am convinced that through the Program for Rare Diseases Treatment of the Ministry of Health assistance is provided to a number of patients with rare diseases. Yet, the adoption of a National Strategy for Rare Diseases in the Republic of Macedonia would mean a huge step forward in the health policy on rare diseases of our country that would provide a major contribution to all patients with rare diseases.

Ladies and Gentlemen,

I am especially pleased with the proactive approach of the Minister of Health, Mr. Nikola Todorov, who, as I was informed by the rare disease organizations, is personally committed to finding solutions to the problems they face.
I commend the engagement of the Health Insurance Fund and I most sincerely hope that from year to year we will hear positive news for the growing number of medications, vitamins, special food for patients with rare diseases on the positive list, subsidies and simplified procedures for import of drugs.
I take this opportunity to commend and encourage all those who are working on scientific research on rare diseases for their increased and committed engagement.
At European level, I am committed to increasing public awareness on rare diseases research, research on advanced therapies, rare disease treatments, especially to maintain the category of rare diseases as a priority in the public health and research at the level of the European Union.
As of this year, I advocate and support the initiative to declare 2019 as the European Year of Rare Diseases. 2019 marks 20 years since the adoption of the EU Regulation on Orphan Medicinal Products and 10 years of the Council recommendation on an action in the field of rare diseases. I urge everyone to support this campaign and vote for the European Year of Rare Diseases that would send a strong message on behalf of the 30 million patients in Europe with 6,000 to 7,000 different rare diseases. This will alert the public and raise awareness of rare diseases and thus will encourage scientists and researchers to focus on rare diseases research which is regularly extremely exhausting for the patients and often endangers their lives.

Respected All,

Rare diseases are a small segment in the heath care system. It certainly does not mean that rare diseases should be ignored. Rarity does not mean rare engagement or rare commitment to this topic. Their rarity means that a better positioning of the rare diseases in the health system is required. It implies increased and strongly committed involvement for introducing changes in this area.

When we talk about rare diseases we actually talk about human lives, not just statistics and figures, whether it is one of ten thousand or one in a million. The rarer the disease of the patients is the more difficult, expensive and inaccessible the treatment is; therefore they need assistance.

I call upon you all, with all our available resources, with all our capacity, to get engaged and dedicated in introducing changes in the field of rare diseases so that we can assist the people with rare diseases and help them in meeting their needs and overcoming the problems they face every day.

Helping our closest ones makes us better people, and the great Mahatma Gandhi said "The best way to find yourself is to lose yourself in the service of others".

Thank you.