PRESS RELEASE

First CEI Conference on building Regional Network of Rare Disease Organisations

23-24 March, Sunday-Monday, 2014, Hotel Porta,

Skopje, R. Macedonia

The Rare Disease Citizen Association “Life with Challenges” has held the First CEI Conference on building regional network of Rare Diseases Organisations, on 23-24 March, 2014 in Skopje R. Macedonia.

This conference is a project that has brought to strengthening the capacities of organisations and increase of networking and communication among rare diseases organisations in the region of Central Europe. With this conference we contribute towards raising awareness for rare diseases (in reference to general public, institutions and medical professionals).

The wife of the President of RM, Mrs Maja Ivanova, the managing director of the Bureau for Medicines of RM, Mrs. Katerina Aleksovska, prof PhD Aspazija Sofijanova,MD, managing director of the Children’s Clinic in Skopje, as well as representative from the Health Insurance Fund (HIFM) and Prof. PhD Dijana Plasheska Karanfilska from MASA (Macedonian Academy of Science and Arts) addressed the conference.

As a honorary sponsor of the European Organisation for Rare Diseases, Mrs. Maja Ivanova emphasized the importance of rare diseases in the health care policies at a national and European level “Rarity does not mean rare involvement, on the contrary, it means great and dedicated work for changes in this area.” She also pointed out that in Macedonia through the relevant ministries programs for treatment of rare disease patients are regularly adopted through approval of funds for appropriate treatments. The involvement of the authorities in this direction is recognized in the fact that two years ago the Committee on rare diseases was established. She also called for the provision of better treatment, early diagnosis and to help in the accessibility in efficient treatments. Merely, working for better quality of life for each patient.

From the Bureau for Medicines of RM  it was emphasised that they appreciate the cooperation with patients’ organisations. It was pointed out that they also work on faster registration of medicines for rare diseases. Through a government project equipment has been provided for early detection of metabolic disorders. At the end Mrs. Katerina Aleksovska stated that through joint organised endeavors they will continue to provide therapy and treatment for rare disease patients.

Saving a child’s life is priceless. It is one thing to say, and it is something different when you meet the patient and when you need to provide treatment.  Thanks to Vesna from “Life with Challenges”, who made us think about these patients and take action to provide treatment, I stand in front of everyone to say what is necessary. With the Committee we make small steps, but what we do is relevant. The challenges wait for no man, as a parent, as human it is my duty to do everything I can for these children.” – stated the managing director of the Children’s Clinic in Skopje prof. PhD Aspazija Sofijanova, MD.

Mr. Branko Adjigogov, counsellor of the managing director of HIFM, Mrs. Maja Parnadjieva-Zmejkova, stated that so far they have provided gluten free products for several rare diseases, and in the following 30 days treatment for Alagille Syndrome and Huntington disease will be provided.

Prof. PhD Dijana Plasheska- Karanfilska from MASA greeted the initiative regarding rare diseases and emphasised that what is important for rare diseases aside from research and study is the early detection and prevention.  The centre in MASA does not stop researching them. We live in time of fast technological advancement when sequenced research enables us to recognize certain genetic mutations and recognize more easily rare disorders, with screening detection and prevention will be conducted more easily, and with that provide better quality of life for those suffering from rare disease.

The president of the rare disease patients’ organisation “Life with Challenges” emphasized the need of adopting National Plan for rare diseases.  The aim of the National Plan for rare diseases is improvement of the quality of life of those suffering from rare disease and their families in Macedonia. Health is basic human right, regardless whether it is about rare or common disease.

The lack of existence of this strategy would mean a threat to human rights of patients with rare diseases and their families Also a systematic access to the treatment of rare diseases would be disabled which as a consequence would have the lowering of quality of life of patients and their families, inability to work, increase of physical and mental disabilities and high incidence of births of children with rare diseases. This would therefore mean lack of relevant plans for health protection in the field of rare diseases.

Within the conference a Manifesto was signed with which the rare disease patients ask for sooner adoption of the National Plan for rare diseases. The Manifesto was publicly signed and supported by patients’ organisations from the region. The patients cannot wait any longer.

The second part of the conference was devoted to presentations by doctors and medical professionals who work in the area of rare diseases. Experiences were exchanged with medical professionals from the country and the region.

The conference is supported by CEI (Central European Initiative), Genzyme- Sanofi Aventis and Celegene Corporation.