the portugués programm on rare diseases
DESCRIPTION
The portugués programm on Rare Diseases. José Róbalo. Presentation of the Strategy in Rare Diseases of the National Health System. (Madrid, Ministry of Health and Social Politics, 2009).TRANSCRIPT
The Portuguese Programme on The Portuguese Programme on
Rare DiseasesRare Diseases
José Marques Robalo
Deputy Director-General of HealthMinistry of HealthPortugal
THE PORTUGUESE PROGRAMME ON RARE DISEASES
The Portuguese Programme on Rare Diseases
has been approvedby the Minister of Healthon November 12th, 2008
THE PORTUGUESE PROGRAMME ON RARE DISEASES
How was this Programme How was this Programme prepared?prepared?
THE PORTUGUESE PROGRAMME ON RARE DISEASES
The first draft of the Programme was developed by a workgroup of 7 experts from these fields:– health care,– medical research,– clinical laboratories,– orphan drug agency,– administration.
THE PORTUGUESE PROGRAMME ON RARE DISEASES
• This programme was on public consultation until January 31st, 2008
• Workshops were held with the stakeholders (health care professionals, researchers, drug industry and patient associations).
THE PORTUGUESE PROGRAMME ON RARE DISEASES
The final draft incorporated all the inputs from the public consultation
and from the stakeholders.
TARGET
All individuals affected by rare diseases, considered within their
families and communities.
THE PORTUGUESE PROGRAMME ON RARE DISEASES
THE PORTUGUESE PROGRAMME ON RARE DISEASES
• Improve the national response to non-satisfied health needs of people with rare diseases and their families;
• Improve health care quality for people with rare diseases.
MAIN GOALS
THE PORTUGUESE PROGRAMME ON RARE DISEASES
• InterventionIntervention• TrainingTraining• Collection of data and information analysisCollection of data and information analysis
THREE MAIN PILLARSTHREE MAIN PILLARS
INTERVENTION STRATEGIES
• Propose specific financial rules for accredited reference centres;
• Define criteria for early diagnosis of rare diseases;
• Guarantee long term, health and social care to people with rare diseases;
• Propose specific support and inclusion to children with rare diseases;
• Create and disseminate guidelines of “best practices” for the promotion of clinical quality and patient safety of people with rare diseases;
• Monitor efficiency and safety of the orphan drugs.
THE PORTUGUESE PROGRAMME ON RARE DISEASES
THE PORTUGUESE PROGRAMME ON RARE DISEASES
TRAINING STRATEGIES
• Promote specific training on rare diseases for health professionals;
• Create and disseminate self-assistance manuals;
• Disseminate scientific information and the available resources.
STRATEGIES FOR DATA COLLECTION AND INFORMATION ANALYSIS
• Develop partnerships between health services, investigation centres and patient associations;
• Monitor health gains resulting from the programme implementation.
THE PORTUGUESE PROGRAMME ON RARE DISEASES
What has been done
until now?
THE PORTUGUESE PROGRAMME ON RARE DISEASES
“The times… they are changing”
José RobaloDeputy Director-General of HealthMinistry of [email protected]