www.raredis.org

National Plans for Rare Diseases:

Bulgarian experience

ICORD meeting – 23-25 February 2009, Roma, Italy

Rumen Stefanov

www.raredis.org

APPROVEDAPPROVED28 Nov 200828 Nov 2008

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RDPLAN

EU good practices and supportLESSONS LEARNTLESSONS LEARNT

Medical community support

11

Strong patient organizationsor alliance 22

Public supportand sympathy

33

Politicalgoodwill

44

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National program for rare diseases 2009-2013National program for rare diseases 2009-2013(genetic, birth defects and non-inherited diseases)(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.

Epidemiological surveillance

Patient associations

Neonatal screening Genetic services

Medical trainingResearch

Awareness Integration

EU

co

llab

ora

tio

n

Budget:Budget:11.3 M €11.3 M €

www.raredis.org

National Consultative

Council for Rare

Diseases

Expert groupsat medical scietific

societies

Ministry of HealthNational Drug Agency

National Health Insurance Fund

Sofia

National register of patients with rare diseases

Plovdiv Pleven VarnaStara

Zagora

Referent counseling offices for rare diseases

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Key Activities for 2009Key Activities for 2009

National Consultative Council for Rare Diseases

Expert groups on rare diseases by medical specialties

Improving genetic infrastructure, equipment and supplies

Improving prenatal and neonatal screening

Network of reference centers for rare diseases

Public awareness

Integrative approach

www.raredis.org

4th Eastern European Conference for Rare Diseases 4th Eastern European Conference for Rare Diseases and Orphan Drugs and Orphan Drugs

"TOGETHER FOR INTEGRATIVE APPROACH "TOGETHER FOR INTEGRATIVE APPROACH TO RARE DISEASES" TO RARE DISEASES"

13-14 June 2009 Plovdiv 13-14 June 2009 Plovdiv

BulgariaBulgaria