The kids from the “smiling” calendar of Association “Cystic Fibrosis” take a new challenge. As the revenue from the calendar has helped repairing and renovating rooms for cystic fibrosis patients in “St. Marina” University Hospital, this time the rare diseases cause will be promoted in another way. The wonderful photos of Yana Peneva are participating in “Charity in Focus” contest of the Bulgarian Donors Forum and “Help for Charity in Bulgaria” Foundation. Support once more people with rare diseases in Bulgaria, by voting for them on the contest website.
June’s edition of “Rare Diseases & Orphan Drugs” is already published. As the National Conference for Rare Diseases is coming, we have chosen the rare diseases centres of expertise as a main focus of this issue. We have invited some of the leading Bulgarian experts to present their views and expectations on the subject of expert centres for rare diseases. Among the other interesting materials in this edition are the recent rare diseases developments in Eastern Europe and the first approved in the EU drug for the treatment of Cushing’s disease. As a patient with the ultra rare Pompe disease (a first case in Bulgaria) was diagnosed last month, we have prepared a brief overview of this disorder in the “Rare Diseases Library”. We would like to remind you that you can subscribe for free using the form in the right.
June 14th is the World Blood Donor day. Under this year’s motto of “Every blood donor is a hero”, the European Commission stresses the importance of safe blood supplies and encourages all European citizens to join the ranks of responsible voluntary donors. Commissioner Dalli said: “Blood is life. Each and every one of us may need blood to recover from a major surgery or a severe accident. For many Europeans, with chronic disease such as haemophilia or thalassaemia, blood is a constant necessity. Blood makes a difference. This is why today, I wish to pay tribute to all donors and to invite Europeans to show solidarity with those in need and donate blood. Become a donor, become a hero”. To read EC official press release, please click here. To find out where you can donate blood, please click here.
A data update of the National registry of patients with chronic myeloid leukemia (CML) was performed from December 2011 to May 2012. After processing the information a total of 328 CML patients was registered. There is an increase of 80 newly registered patients in comparison with the previous update. At the time of the study patients were treated and followed up in seven hospitals in the country, primarily in university hospitals.
You can find further information on the National CML registry in the epidemiological registries’ section of the website.
We are pleased to inform and invite you to the Third National Conference for Rare Diseases and Orphan Drugs, which will be held on 14-15 September 2012 at the Congress Centre of Novotel Plovdiv. This year’s event will focus on the centres of expertise for rare diseases. We have prepared a diverse programme with interesting speakers. The deadline for early registration is 15 July 2012. You can register, send an abstract to participate and explore the preliminary programme on the official website of the event – www.conf2012.raredis.org. Do not miss the most significant forum for rare diseases in Bulgaria!
The Second European lymphangioleiomyomatosis (LAM) conference will be held on 28-29 September 2012 in Barcelona, Spain. It is an international meeting with the purpose of getting insights into the new results of LAM research and sharing them with patient community with educational objectives. The event is organised by AELAM (Spanish LAM Association) and SEPAR. For more information, please visit the event’s official website.
The World Federation of Hemophilia (WFH) is organizing the World Congress of Hemophilia. This event is very important to the global bleeding disorders community. The XXX WFH World Congress will take place from 8-12 July 2012 in Paris, France. The Congress will feature presentations, workshops, and exhibits on cutting-edge trends in research and treatment for hemophilia and other inherited bleeding disorders. For more information, please visit the event’s official website.
The Thalassaemia International Federation (TIF) is organising the 3rd Pan-European Conference on Haemoglobinopathies and Rare Anaemias. This event is the greatest and most important scientific conference in Europe in the field of haemoglobinopathies. One of the aims is to set the scene of implementation of national prevention and management programmes in all EU Member States. The three-day conference will take place on 24-26 October 2012 in Limassol (Cyprus). For more information, please, visit the event’s official website.
The First Eurasian Conference on Rare Diseases and Orphan Products together with the Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “Lifeline” will take place on 21-23 June 2012 in Moscow, Russia. This pilot Eurasian rare diseases platform is a joint initiative of the Russian national association of patients with rare diseases “Genetics”, the Russian federal scientific and clinical center of pediatric hematology, oncology and immunology “Dmitriy Rogachev”, the Eurasian Alliance of rare disease, the Bulgarian association for promotion of education and science and the Italian national centre for rare diseases. The event will focus on global rare diseases policy trends, such as rare diseases registries, standards of treatment and rehabilitation of rare diseases, and palliative care for patients with rare diseases. For further information and registration, please, visit the conference official website.
Two very important rare diseases legislative changes have occurred in Eastern Europe last month. On 26 April 2012 the Russian government adopted a decree establishing a Federal Registry for Rare Diseases, comprising 7 groups of rare disorders and post-transplantation conditions. During the same period, a legislative proposal was submitted for consideration in the Verkhovna Rada (the Parliament) of Ukraine, aiming to ensure access to treatment for patients with rare diseases. Both initiatives are keystones for Eastern Europe and this success is a result of many years of hard work and collaboration of the National Association “Genetics” (Russia) and the Association “Children with spinal muscular dystrophy” (Ukraine) respectively.