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