Dorica National Plan Romania

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Dorica National Plan Romania

  1. 1. National Plan for Rare Diseases Romania Dorica Dan – President RPWA/ RONARD BALKAN CONGRESS FOR RARE DISEASES ROMANIA June 26-27, Cluj -Napoca Balkan Congress for Rare Diseases
  2. 2. Balkan Congress for Rare Diseases
  3. 3. The Romanian NATIONAL PLAN FOR RARE DISEASES was passed after 4 stages: i The identification of needs, fields of intervention and consisting parts; November 2-3, National Conference 3. Creation of the plan itself , involving the Ministry of Health; 4 working groups meetings Involvement of the authorities in the WG; h The public debate phase Rare Diseases Campaign m The signed partnership agreement with the Ministry of Health; 29 February 2009; Balkan Congress for Rare Diseases
  4. 4. • It is time for Public Authorities to consider rare diseases as a Public Health priority and take action to concretely support patients and families affected by rare diseases. NEEDS: • Unite the efforts of the different rare disease patient organizations in Romania. • Work to end the ongoing isolation for rare disease patients that the health system, mass media, and scientific researchers in our country foster. • Advocate for an adequate national strategy, to ensure better health care, educational and social services for our patients. = Balkan Congress for Rare Diseases
  5. 5. ◦ A partnership agreement between MH and RONARD for implementing a National Plan for Rare Diseases in Romania was signed on February 29, 2008, the 1st European wide Rare Diseases Day; ◦ still, it is not included in the National Strategy for Health; Balkan Congress for Rare Diseases
  6. 6. July 1, 2008 – a national program that included orphan drugs began where the drugs were 100% compensated -Budget 1,300,000 EUR -2009 – more orphan drugs added to the program -Budget 13,500,000 EUR -Funding for national registries was allocated -Both in 2008 and 2009 (in 2008 was not used); -The budget for screening was increased -it does NOT cover (no infrastructure) the entire country, so effectively, Romania HAS NO SCREENING; Balkan Congress for Rare Diseases
  7. 7. 'Partnership Norwegian-Romanian (NoRo) for progress in Rare Diseases’ made towards financing the Norwegian Cooperation Program with Romania. - MH is the co-funding partner; - Open for other projects in partnership; - Progress still slow; Balkan Congress for Rare Diseases
  8. 8. Balkan Congress for Rare Diseases

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