Information Centre for Rare Diseases
and Orphan Drugs - Bulgaria

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• In a Time of Economic Difficulty Some Form of Health Technology Appraisal Is Inevitable

  May you briefly introduce yourself to our readers? Edmund Jessop (EJ): My name is Edmund Jessop. I am medical adviser to the Advisory Group for National Specialised Services. Our team plans, funds, and monitors a set of services for very rare and highly specialised services provided by the National Health Service in England. Jacqueline Bowman (JB): I am the Executive Director of EPPOSI (European Platform for Patients’ Organisations, Science & Industry) which is a think tank active on addressing questions on health policies at a European level that aim to bridge the gap between innovations and improved health outcomes of citizens. We have been in existence since 1994 and now have 55 member organisations equally weighted between representatives fr ->>>

• “Rare Diseases & Orphan Drugs” – issue 14

  The first issue of “Rare Diseases & Orphan Drugs” for 2013 is now published on Rare Disease Day. You can find in it all the information about the events that are taking place in Bulgaria on this occasion. Further, Dr. Manuel Posada, Director of the Institute for Rare Diseases Research in Madrid will present the rare diseases registries. Rare Diseases Library features one of the “common” rare diseases – Duchenne muscular dystrophy. You can also check the rare diseases events schedule for 2013, as well as to read more about the latest European project in rare diseases field – “Rare Diseases Best Practices”. Have nice minutes with “Rare Diseases & Orphan Drugs”.

• Rare diseases registries in search of answers

  May you briefly introduce yourself to our readers? My name is Manuel Posada. I am the Director of the Institute of Rare Diseases Research (IIER) at the Institute of Health Carlos III (ISCIII), a governmental research institute in Spain. I am a physician, specialist in Internal Medicine and also in Preventive Medicine and Public Health. First of all, is there a particular reason for you to be involved in rare diseases activities? When did you first “face” the rare diseases? During my training for getting the Internal Medicine specialty, I had the opportunity of care and diagnosis a lot of people with rare diseases, because the hospital was at that time a national center for several pathologies. Some years later, I had to face on a severe epidemic of ->>>

• Conference proceedings book

  3rd National Conference for Rare Diseases and Orphan Drugs proceedings book is now published on our website. You can explore all the presentations and posters (in Bulgarian). ICRDOD would like to thank all the speakers and participants once again!

• 4th National Conference for Rare Diseases

  The 4th National Conference for Rare Diseases and Orphan Drugs will be held on 13-14 September 2013 at the Congress Centre of Novotel – Plovdiv. The EU Directive on Cross-Border Healthcare and its requirements for rare diseases will be the main topic of the event. How will the Directive affect the access of patients with rare diseases to diagnostic and therapeutic interventions? What conditions will the future centres of expertise for rare diseases need to meet? Will there be networks of these centres in Bulgaria? What new opportunities will be available to both physicians and patients? These are just some of the questions whose answers will be discussed during the event. You can register and find more information on the conference website R ->>>