The European Commission has launched a public consultation in view of modernising rules on the transparency of Member States’ decisions regarding the pricing and reimbursement of medicines. The consultation invites all interested parties to share their views on the review of Council Directive 89/105/EEC, often referred to as the ‘transparency directive’. Although the prices of medicines and reimbursement are decided at national level, the Transparency Directive is aimed at facilitating the free movement of medicines in the EU. The consultation will help the Commission determine how to best update the existing rules to reduce pharmaceutical prices, guarantee transparent national procedures and facilitate a broader and timely access to medicines. The consultation can be found here.
The Second National Conference for Rare Diseases and Orphan Drugs’ website is now active. On www.conf2011.raredis.org you can register to participate and get in touch with the event’s recent news.
The second issue of BAPES official newsletter is now published. The highlights include the epidemiological registries for rare diseases in Bulgaria, role of specialized rehabilitation in Prader-Willi syndrome management, as well as interview with Ms. Yordanka Petkova, coordinator of NAPRD for Plovdiv region.
National Alliance of People with Rare Diseases together with Medical University of Pleven is organizing a training seminar for GPs on the occasion of Rare Disease Day. Leading medical professionals will introduce the diagnosis and treatment specifics of selected rare diseases, such as cystic fibrosis, pulmonary hypertension, epidermolysis bullosa and thalassemia major. The seminar will take place on 28 February 2011 from 14 a.m. at Avicenna Hall A of the Faculty of Medicine in Pleven.
National Alliance of People with Rare Diseases together with Pleven Municipality will organise a charity concert on the occasion of Rare Disease Day 2011. The event will start on 12 a.m. on Vazrazhdane Square in Pleven. Various artist will take part, including Signal, Vasko Krapkata, Petsko’s Trio and Northern Folklore Ensemble.
ICRDOD will participate in Rare Diseases Day by organizing a workshop for GPs on 28 February 2011. ICRDOD team and experts from Medical Centre “RareDis” will present the main concepts in rare diseases’ field, as well as the role of physical rehabilitation and patient training in the management of selected rare diseases.
National Alliance of People with Rare Diseases and Association of Medical Students – Varna are inviting you to a “Teddy Bear Hospital”. It is a part of Rare Disease Day events in Bulgaria and will take place on 27 February 2011 at Grand Mall Varna from 10.30 a.m. “Teddy Bear Hospital” is an international project, organized by medical students in different countries. The objective is children to overcome their fear of hospitals and doctors by playing games. Take your favorite teddy bear and come to this kids’ morning!
National Alliance of People with Rare Diseases together with Medical University of Varna and Association of Medical Students – Varna is organizing a training seminar for GPs on the occasion of Rare Disease Day. Leading medical professionals will introduce the diagnosis and treatment specifics of selected rare diseases, such as acromegaly, porphyrias, Wilson disease, thalassemia major. The seminar will take place on 26 February 2011 from 9 a.m. at Hall A of the Faculty of Dental Medicine in Varna. For more information and registration, please contact varna.conference@gmail.com.
National Alliance of People with Rare Diseases is organizing a training workshop for GPs on the occasion of Rare Disease Day. Leading medical professionals from the Faculty of Medicine at the Thracian University in Stara Zagora will present the specifics of diagnosis and treatment of selected rare diseases, such as primary immunodeficiencies, epidermolysis bullosa, thalassemia major and cystic fibrosis. The event will take place in Hall 1 of the Faculty of Medicine in Stara Zagora from 9 a.m. on 26 February 2011. For more information and registration, please contact Ms. Nezabravka Asenova (nezzius@abv.bg).
On the occasion of Rare Disease Day 2011 and the upcoming events in Bulgaria ICRDOD has prepared an interview with Mrs. Yordanka Petkova, chairperson of the Bulgarian Association of patients with hereditary angioedema and coordinator of NAPRD for Plovdiv region. Mrs. Petkova has been the driving force in the series of successful raising-awareness and charity campaigns of NAPRD. You can read the interview in the new issue of BAPES newsletter next week.