The Fifth National Rare Disease and Orphan Drugs Conference was held on 26-27 September 2014 in Novotel Plovdiv and coincided with 10th anniversary of Informational Centre for Rare Diseases and Orphan Drugs.
To celebrate it the Institute for Rare Diseases invited the people it successfully collaborated with during the years who contributed for the advancement and developments in rare disease field in Bulgaria. Their activity and desire for change, their professionalism and devotion helped to promote awareness and care for people with rare diseases.
Prof.D-r Rumen Stefanov, director of the Institute, awarded 14 notable patient representatives, doctors, scientists, journalists and politicians. Little sculptures with the logo of Centre for Rare Diseases were еspecially created for the occasion by Atanas Karadechev – the famous sculptor from Plovdiv. Every honoured person’s contribution was announced shortly at the ceremony while watching photos from the past 10 years on the video screen. Awards were presented to:
Vladimir Tomov
Chairman of National Alliance of People with Rare Diseases. The man who helped to create many patient organzations for rare diseases and brought them together. Active advocate for patient rights at many forums, work groups, conferences and meetings in the field. Contributed significantly for provision of treatment for patients with different conditions.
D-r Daniela Daritkova
Pediatrician who didn’t cancel her medical practice while being a member of the parliament. Chairman of Healthcare Commission. She organised meetings dedicated to Health Technology Assessment. Initiated a change in Healthcare Low, concerning rare diseases.
Desislava Dimitrova
Deputy minister, lawyer and economist. Chairman of Supervisory Board of National Healthcare Insurance Fund. Procured European funding for many health projects. Ensured stability and work continuity during minister changes. Supported projects in the field of rare diseases.
D-r Domenica Taruscio
Director of the Italian National Rare Disease Centre part of National Healthcare Institute. Geneticist. Scientific coordinator of many European and international projects for rare diseases – EUROPLAN, EPIRARE, RARE-Bestpractices, etc.
D-r Emil Raynov
Member of parliament and deputy minister of healthcare. Chairman who presided the Board of National Healthcare Insurance Fund for the longest period. Deputy minister who promoted the development of rare disease legislation. Participated in the establishment of National Alliance of People with Rare Diseases.
Zorka Parvanova
Historian, scientist and former first lady of Bulgaria. Initiated Bulgarian Christmas charity project. Supported the adoption of National Program for Rare Diseases and the activities of Informational Centre for Rare Diseases and Orphan Drugs – Plovdiv.
Maria Karaboycheva
Journalist writing for Maritsa newspaper. Made public many stories of people with rare diseases in her articles and interviews.
Nevena Popova
Journalist for zdrave.net. Her articles dissect the problems in the healthcare system and rare diseases are often discussed.
D-r Nedelja Shtonova
Neurologist, journalist, psychotherapist. Host of TV shows “Before medications” and “Spirit of health”. She tells the stories of people with rare diseases with much compassion and understanding.
D-r Nigyar Jaffer
Physician and health management specialist. Member of three parliaments. Chairman of Healthcare Commission. Healthcare Law got its final draft due to her efforts and now it allows rare disease patients to get treatment in foreign expert centres.
Prof. D-r Radka Tincheva
Pediatrician and geneticist. Many parents of children with rare conditions were supported by her calm and considerate manners. As Chairman of National Rare Disease Council she dedicated her efforts to improve the care for these patients.
Prof. D-r Radoslav Gajdarski
Leading consultant and surgeon in “Gall, pancreatic, liver and general surgery” at Tokuda Hospital. Author of over 100 scientific papers. Participated in the first liver transplantation in Bulgaria. Member of parliament and Minister of Healthcare. Increased the budget for treatment of oncology and rare disease patients. Formed the work group for the development of National Program for Rare Diseases – one of the first in Europe.
D-r Stephen Groft
Director of Office of Rare Disease research ay National Institute of Healthcare. Collaborated on many projects with legislators, politicians, managers, researchers, pharmaceutical companies, families and patient organisations to create a society that effectively cares for the needs of the sick people.
Prof.D-r Chavdar Slavov
National consultant and manager of the best urological clinic at Alexandrovska hospital. Teacher, author of manu scientific papers and textbooks. Innovator in reconstructive surgery field. The deputy minister whose efforts resulted in adoption of the Regulation for centres of expertise for rare diseases.
You can see pictures from the ceremony in the gallery:
