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Dorica National Plan Romania

M
Mihaiela Fazacas

The document discusses Romania's National Plan for Rare Diseases, which passed through four stages of identification of needs, conferences, plan creation with Ministry of Health involvement, and public debate, before a partnership agreement was signed with the Ministry of Health in February 2009. It notes that while progress has been made, rare diseases are not yet included in the national health strategy and screening does not cover the entire country. A Norwegian-Romanian partnership was also formed to help finance rare disease projects, though progress remains slow.

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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
Balkan Congress for Rare Diseases
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
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
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
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
'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
Balkan Congress for Rare Diseases

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Dorica National Plan Romania

  • 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. Balkan Congress for Rare Diseases
  • 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. 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. 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. 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. '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. Balkan Congress for Rare Diseases