The Portuguese Programme on Rare Diseases José Marques Robalo Deputy Director-General of Health Ministry of Health Portugal.

Slides:

Advertisements

Similar presentations

Planning and preparing the national HES EHES Training seminar, Rome 11 February 2010 Päivikki Koponen.

Advertisements

Animal Experimentation – an Introduction Made in the interest of Animals by FIAPO. Please direct any queries to Alokparna Sengupta at

UNDERSTANDING THE SITUTATION OF HEALTH CARE IN EASTERN EUROPE, ESPECIALLY IN THE FIELDS OF GIST Mr. Stefan Mandov – GIST Alliance for patients Bulgaria.

¨ Dr Alain Garcia General Secretary of the Rare Diseases National Plan The second National Plan for Rare Diseases in France

EU rare diseases registry for Niemann-Pick Disease type A, B and C Tarekegn Hiwot Consultant in Inherited Metabolic Disorders University Hospital of Birmingham.

___State Program Improvement Planning (PIP) Process and Expectations Date (7/30/07)

Scottish Intercollegiate Guidelines Network (SIGN)

Rulemaking Process Scott Nester SJVUAPCD Planning Manager November 4, 2003.

DEVELOPMENT OF A NATIONAL HEALTH DATA DICTIONARY: A PALESTINIAN EXAMPLE Mazen Skeik, BSc. MPHOct. 5 th 2011.

State Program Improvement Planning Process and Expectations National Child Welfare Resource Center for Organizational Improvement A service of the Children’s.

By; Nelson Baziwelo Zakeyu Secretary to the Alcohol Policy Task force Committee and, Executive Director – Drug Fight Malawi Web site:

Oral Health is on the Move in Michigan: We’ve got a Plan! Michigan Oral Health Coalition.

IAEA International Atomic Energy Agency Overview of legal framework Regional Workshop - School for Drafting Regulations 3-14 November 2014 Abdelmadjid.

Pharmacovigilance Programme of India

UPDATE ON THE 100 DAYS PLAN for Kenya

Integrated dementia care in the Netherlands M. M. Mahler, MSc, Senior Program Officer Dementia.

Project Goals  Support the National Tb Program (NTP)  Developed National Guidelines for prevention and control of Tb  Developed guidelines for treating.

MEDICAL LABORATORY TECHNOLOGY What will I do? Perform tests on human blood, tissue and fluid Be a part of the health care team Help the doctor diagnose.

HTA cooperation in the EU EPF workshop Jérôme Boehm 18 May 2010.

Pandemic Influenza Planning – Some Issues for Consideration by Schools of Nursing November 15, 2006 By Dr. Brian Emerson, Medical Consultant, BC Ministry.

A Study on Environmental Standards and Their Trade Impact on Indian Textiles & Clothing Industry (SESTI) PROSAIG Project Advisory Committee Meeting 8 th.

Orphanet Europe State of the Art of Database and Services Polish activity Orphanet Europe State of the Art of Database and Services Polish.

a proactive workforce & rehabilitation Agency Earl McDowell, Deputy Administrator Workforce Solutions Unit, DETR Sector Council Update.

Portugal’s Gender Statistics Database: the Gender Profile Economic Commission for Europe Conference of European Statisticians Group of Experts on Gender.

Accreditation of health practitioners in Russia starting from 2016: answers to frequently asked questions.

UPCOMING CHANGES TO IN-VITRO DIAGNOSTICS (IVDs) AND LABORATORY DEVELOPED TESTS (LDTs) REGULATIONS Moj Eram, PhD November 5, 2015.

WHO priorities and plans 2012/13 Dr Jarno Habicht WHO Representative 15 December 2011.

Culture Satellite Account : The Road Ahead UIS Culture Satellite Account Experts Meeting (CSAEM) 4-6th November 2015 José Pessoa, Programme Specialist,

Washington’s Pain Management Rules April 22, 2013 Kristi Weeks, Director, Office of Legal Services Washington Department of Health.

Code of Conduct on the Safety of Research Reactors, 2-6 November 2015 Lisbon, Portugal IAEA/COMRSIN National Nuclear Research Centre, Ministry of Communications.

GARD PROJECT IN CABO VERDE José Rosado Pinto GARD WHO Meeting Beijing March 2005 Serviço de Imunoalergologia, Hospital de Dona Estefânia Lisboa,

1 Scaling-up ART in Thailand: the role of policy networks Sripen Tantivess International Health Policy Program, Thailand CREHS Data Analysis Workshop,

Bulgarian National Hepatitis Plan and Compassionate Use Regulations Dr. Stanimir Hasardzhiev Executive Director, ELPA Chairperson, Hepasist REPUBLIC OF.

Developing a national governance framework for health promotion in Scottish hospitals Lorna Smith Senior Health Improvement Programme Officer NHS Health.

13/06/2016Ministry of Health. 13/06/2016Ministry of Health eHealth: priorities and activities 1.Priority Services and destination groups of eHealth 2.Pilot.

M O N T E N E G R O Negotiating Team for the Accession of Montenegro to the European Union Working Group for Chapter 28 – Consumer and Health Protection.

ROMANIA THE TRANSPOSED U.E. LEGISLATION ON GOOD LABORATORY PRACTICE.

Drug Screenings Service in Greenville, NC

Have your say on Pharmacy Services in Warrington

Regulatory Updates Health Sciences Authority Singapore

Medicaid Coverage of Pharmaceuticals Life Science Tennessee

Making NICE research nicer Involving patients, carers and the public

Grid Code Review Panel 16th August 2017

Department of Health and Human Services Community Paramedicine

Yulia Mikhaylova Chair Expert Group on Primary Healthcare

Associação Brasileira de Paramiloidose

Healthcare management

Indiana Traumatic Brain Injury (TBI) Advisory Board

Professional Organizations

SOCIAL DIALOGUE WITHIN EUPAN

The International Consortium for Personalised Medicine

Mrs. AP Psychology Exam Review VMC Final Exam: Tuesday, January 28th 1:30-3:30 90 Multiple Choice (90 marks) 2 Long Answer (15 marks.

Suzanne M. Sensabaugh, MS, MBA

Registration is Open:

Joint Powers Agreement

Next Generation Task Force

SOCIAL DIALOGUE WITHIN THE SCOPE OF EUPAN

Administrative Burden Citizens - Project experiences SIRA Consulting -

Collaboration Across the Lifecycle of Treatment Development and Safe Use – Contributions from Stakeholders Early Development Later Development Regulatory.

Medical Device Safety: India’s Perspective

Head of Corporate Governance/ Board Secretary

Performance Excellence Committee

EUnetHTA Assembly May 2018.

NICE has many methods and processes

Josep M. Borras Milano, October 25, 2018

Overview Signed into law on July 31, 2018

Revision of the 1999 Comprehensive Health Curriculum Framework Board of Elementary and Secondary Education June 25, 2019 Rachelle Engler Bennett and.

PMB Review Update PO’s Forum

Integration of Rare Diseases in the Philippine National Health System

Research transparency strategy

Presentation transcript:

The Portuguese Programme on Rare Diseases José Marques Robalo Deputy Director-General of Health Ministry of Health Portugal

THE PORTUGUESE PROGRAMME ON RARE DISEASES The Portuguese Programme on Rare Diseases has been approved by the Minister of Health on November 12th, 2008

THE PORTUGUESE PROGRAMME ON RARE DISEASES How was this Programme 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 31 st, 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.

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 Collect data and analyse informationCollect data and analyse information THREE MAIN PILLARS

The Portuguese Programme on Rare Diseases José Marques Robalo Deputy Director-General of Health Ministry of Health Portugal