February 28-th – International Rare Disease Day


Bulgarian organization of voluntary blood donation once again joins in and expresses its support for the international awareness campaign, organized to commemorate the Rare Disease Day – February 28th. For the year 2013 the campaign will be performed under the slogan “Rare disorders without borders”.

A disease or disorder is defined as rare in Europe when it affects less than 5 in 10000 people. Despite that fact, the number of people suffering from rare diseases is high, due to the fact that there are around 8000 rare diseases identified so far. According to calculations of the European Union, today between 6 and 8 % of the population of the Union are suffering from rare diseases, totaling up to 29 million people altogether. The people affected are, in fact, significantly more, since such a disease leads to a drastic change in the life not only of the patient, but his whole family, due to the necessity of daily care. They encounter numerous problems, related to the difficult diagnostics of these diseases, the lack of treatment and the extremely high price of the life-supporting therapy they have to undergo.

About 80% of the rare diseases are genetic, the rest are rare forms of cancer, autoimmune diseases, congenital malformations, toxic and infectious diseases, etc.

In Bulgaria more than 400 000 people are suffering from rare diseases, most of them – children. The treatment for them consists not in eliminating the disease, but in a constant life-supporting therapy. For a large part of the patients, a significant part of that therapy includes regular transfusions of blood or blood products. Sufficient blood quantities will help people with rare diseases to live a life of full value and the only way this can happen is by blood donation!

Bulgarian organization of voluntary blood donation yet again joins the initiative of the European organization for Rare Diseases – EURORDIS for raising awareness and commemoration of the International Rare Disease Day. The Project “Together in diversity” is one of the initiatives, through which we show our support and empathy to all people suffering from rare diseases, in an effort to turn the attention of the society to their existence. The project includes an informational campaign, a part of which is the distribution of a charity calendar for 2013. BOVBD joined the project in support of people suffering from Thalassemia Major – a rare, genetic, hematological disease, since shortage of blood is a serious problem for those patients who need a blood transfusion on every 20-25 days. We take this opportunity to once again call upon everyone, whose health permits, to overcome the fear of donating blood and the carelessness to the shortage of blood and to become a regular blood donor. You can learn more about the initiative from the interview of Nadezhda Tzekulova with Stefka Popova, President of Bulgarian Organization of Voluntary Blood Donation, aired on the Bulgarian National Radio on February 23rd 2013 as a part of the information campaign.

For more information about rare diseases visit the internet websites of the European organization for rare diseases – EURODIS and the National alliance of people with rare diseases, as well as the special website for the International Rare Disease Day.

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