Conference on creating National alliance for rare diseases of R. Macedonia
22 March (Saturday) 2014 hotel “Porta”, Skopje, R. Macedonia
The rare disease citizen association “Life with Challenges”-Bitola together with The Association for Hemophilia, rare coagulopathies and Von Willebrand- HEMOLOG and the Association for Emancipation, Solidarity and Equality of Women of Republic of Macedonia- ESE oranised a Conference on Creating National Alliance for Rare Diseases of R. Macedonia on 22 March, Saturday in hotel “Porta”, Skopje. The conference is part of a project that is realized within the framework of the USAID Civil Society Project implemented by the Foundation Open Society- Macedonia. Also the project is supported by Genzyme- Sanofi Aventis and Celgene Cooperation.
“I am very proud that such a project is supported by the USAID Project on Civil Society implemented by the Foundation Open Society. Working with Vesna from Life with Challenges I have come to know the problems and challenges people with rare diseases in Macedonia face. Regardless whether it is about rare, very rare or extremely rare diseases there is need of joint support and cooperation to provide necessary care. This alliance will strengthen the cooperation and will give patients a stronger voice in front of the institutions. I have met few patients and every time I am amazed by the courage and perseverance of these people who do not allow the rare disease to define them. They are the heroes of our times. I encourage institutions in Macedonia to make all that is within their abilities in order to help the families facing rare diseases.“-stated Mrs. Mary-Jo Wholers, Embassy of the USA in Macedonia, honorary member of The Rare Disease Citizen Association “Life with Challenges”- Bitola.
Prof. PhD Elena Kjosevska, specialist in social medicine, Public Health Institute of Republic of Macedonia, managing director of the Department for promotion of health, analysis and prevention of contagious diseases stated: “The Public Health Institute will be involved in the activities that lead to improvement of data gathering, monitoring and situation analysis and with the support of the Ministry of Health to establishing registries which will offer basis for careful planning of measures for improvement of conditions in the area of rare diseases. With joint efforts we can move towards improvement of the situation with rare diseases and I hope that we will make successful steps forward for the benefit of all families facing rare diseases.“
Borjan Pavlovski, coordinator of the Programme on Public Health and Women’s Health in the Association for Emancipation, Solidarity and Equality of Women of R. Macedonia-ESE, stated: When the Associations Hemolog and Life with Challenges approached us for the first time with the idea for and Alliance we were taken by the enthusiasm that they fight the fight for people with rare diseases. Human rights in health care guarantee that every citizen has the right to health. We are aware that these are complex diseases and the treatment is often expensive, but this does not mean that these people should not be provided for in order to contribute society as healthy citizens. We know that the problems cannot be resolved at once, but step by step the aim can be achieved.“
Mr. Branko Adjigogov, counsellor of the managing director of the Health Insurance Fund of R. Macedonia, stated: “Unfortunately in Macedonia still there is not an official registry for rare diseases and that is a big problem, especially because of the fact that we cannot know the financial implications in order to bring right decision regarding treatment and care for patients. We have managed to contribute towards provision of appropriate diet which is medicine for certain diseases such as PET syndrome and Phenylketonuria and we continue with the endeavours to provide suitable supplements for Alagile Syndrome and Tyrozynemia. We hope that with such small steps we will contribute towards normalisation of the situation.“
Vesna Aleksovska, president of the Rare Disease Citizen Association “Life with Challenges”- Bitola, stated: “The idea for an alliance emerged from our cooperation and we are aware that joined we can have a stronger voice as rare patients. We are aware of the lack of sufficient epidemiological data, the need of screening, the need for improved diagnosis, the obvious need for an increase of the budget for rare diseases and amendments of the legislation on rare diseases and many other steps that need to be made in order to reach better quality of life for patients with rare diseases. The Proposal National Plan that we have created according to European Regulative is what we consider as a foundation for improvement of the conditions.“
Cveta Nakjeska, founder and member of the Managerial Board of HEMOLOG – Association for Hemophilia, Von Willebrand and rare coagulopaties stated: Entering this alliance is a benefit for all of us. We are creating it in order to work towards better quality life, and not survival. The motto of the World Hemophilia Alliance this year is – Speak out: create change. From small steps and locked doors we walk towards greater steps and unlocked doors. I believe and I am certain that this alliance will achieve its aim and form paper it will move into action.“
The main aim that was achieved with this project is uniting about ten rare disease associations with the aim for joint endeavours in fostering and support of reform in the health-care system in the area of rare disease. The main focus with the establishing of the Alliance was defining the National Plan on Rare Diseases which will provide long-term solutions for the problems and challenges rare disease patients and their families face.
Among patient representatives, patient organisations and representatives from relevant institutions from Macedonia, representatives of EURORDIS (European Organisation for Rare diseases), EGA (European Gaucher Alliance) and representatives of patient organisations from Bulgaria, Serbia, Slovenia, Bosnia and Herzegovina and Croatia were also present. They represented their national alliances and federations and National Plans and Strategies on Rare Diseases in their countries accordingly.
Borjan Pavlovski ESE 02/3298 713, 02/3298 295, firstname.lastname@example.org
Vesna Aleksovska, Life with Challenges 070 705 446, email@example.com, firstname.lastname@example.org, email@example.com
Dragi Lulevikj, Hemolog, 071 796 247, firstname.lastname@example.org, email@example.com