Tomov Romania 1

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Tomov Romania 1

  1. 1. National Alliance of People with Rare Diseases - Bulgaria Bulgarian National Plan for Rare Diseases Vladimir Tomov
  2. 2. National Alliance of People with Rare Diseases - Bulgaria The National Alliance of People with Rare Diseases (NAPRD) - Bulgaria is officially registered on June 27th, 2007.  The idea of its creation grew in September 2006 during the Second Eastern European Conference on Rare Diseases, which took place in Bulgaria.  To a great extent we were encouraged by the presentations of EURORDIS.
  3. 3. National Alliance of People with Rare Diseases - Bulgaria  It was held on April 14th 2007 in Sofia and representatives of different patients’ organizations, as well as separate patients with rare diseases took part in it.  The event was given a large publicity in the media – national TV channels as well as leading newspapers gave tribute to the conference.  The conference was opened with the special participation of the Ministry of Health
  4. 4. National Alliance of People with Rare Diseases - Bulgaria Member of EURORDIS NAPRD now represents people with 24 rare diseases
  5. 5. National Alliance of People with Rare Diseases - Bulgaria  The greatest charity event for 2007 was the Christmas charity concert. concert  Different performers from Bulgarian show business took part free of charge.  With a part of the total sum of 3624 Euros collected, advertising materials were produced and the rest was spent on supporting The National Alliance of people with rare diseases.
  6. 6. National Alliance of People with Rare Diseases - Bulgaria On 23 December 2008, Christmas Charity Cocktail took place in Plovdiv. The official clip of the campaign was “Give Me a Hand, Together We Can Help!”. About 11 000 euro were collected and donated to the Alliance.
  7. 7. National Alliance of People with Rare Diseases - Bulgaria In 2008, the greatest public event in the life of NAPRD was celebrating the European Day of Rare Diseases - February 29th  The official part started with a press conference held on Feb 26th, in which all members of NAPRD took part.  National TV channels started their daily programmes with representatives of rare diseases and their problems.
  8. 8. National Alliance of People with Rare Diseases - Bulgaria On February 29th, 6000 balloons, symbolising the number of rare diseases, were let off in front of diseases the National Palace of Culture situated in the centre of Sofia. The balloons spread all over the square viewed by many representatives of patients’ organizations and supporters.
  9. 9. National Alliance of People with Rare Diseases - Bulgaria  European Rare Diseases day – 29 February 2009  25 countries all over the world  Celebrated in 6 cities in Bulgaria  Charity concert, art exposition, press-conferences, prayer services, etc.
  10. 10. National Alliance of People with Rare Diseases - Bulgaria
  11. 11. National Alliance of People with Rare Diseases - Bulgaria MEDIA coverage 2008 1. The National Alliance of people with rare diseases was included as a party in the Parliamentary discussion in scheduled sessions of the Parliamentary Committee of Healthcare on sessions March 13th – March 27th – April 17th with main subjects of discussion “The National Programme of Rare Diseases” and “Urgent provision of medecines for the specific diseases”. 2. The National Alliance of people with rare diseases became a member of the National committee for programmes on rare diseases and by its energetic actions made the programme on genetic diseases become activated. 3. On Zdrave TV - a specialized medical TV channel – a regular programme representing separate rare diseases was started. started
  12. 12. National Alliance of People with Rare Diseases - Bulgaria MEDIA coverage 2008
  13. 13. National Alliance of People with Rare Diseases - Bulgaria APPROVED 28 Nov 2008
  14. 14. National Alliance of People with Rare Diseases - Bulgaria National program for rare diseases 2009-2013 (genetic, birth defects and non-inherited diseases) To create an adequate institutional framework and mechanisms, ensuring timely prevention, diagnosis, optimal treatment and rehabilitation of patients with rare diseases (genetic, birth defects and non-inherited diseases) in Bulgaria. Patient associations EU collaboration Awareness Integration Budget: Research Medical training 11.3 M € Neonatal screening Genetic services Epidemiological surveillance
  15. 15. National Alliance of People with Rare Diseases - Bulgaria Ministry of Health National Drug Agency Expert groups National Health Insurance Fund at medical scietific societies National Consultative Council for Rare Diseases Stara Sofia Plovdiv Pleven Varna Zagora National register of patients with rare diseases Referent counseling offices for rare diseases
  16. 16. National Alliance of People with Rare Diseases - Bulgaria EU good practices LESSONS LEARNT and support Strong patient organizations or alliance 2 1 RD Medical Political community goodwill PLAN support 4 Public support and sympathy 3
  17. 17. National Alliance of People with Rare Diseases - Bulgaria THANK YOU FOR YOUR ATTENTION www.raredis.org

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