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Strategic Plan 2009-2014
VISION
ANBRaRo vision is a world that gives a normal life to patients with rare diseases in Romania.
MISSION
ANBRaRo mission is to develop and carry out lobbying activities and advocacy to improve the quality of life of patients with rare diseases in Romania through the empowerment and involvement of social actors in this area: patients, families, professionals and decision factors.
GENERAL OBJECTIVE
Improving quality of life for people with rare diseases in Romania.
SPECIFIC OBJECTIVES
1. National Implementation Plan for Rare Diseases in Romania and its inclusion in the national strategy for public health.
1. Plan objectives:
-improving access to information on rare diseases;
-establishing a national strategy to ensure adequate measures of prevention, diagnosis, treatment and rehabilitation of patients with rare diseases;
-creating a national registry of rare diseases;
-stimulate research in the management of rare diseases;
-training programs for professionals in various fields of knowledge and the rare diseases;
-collaboration with organizations, EU and international networks;
2. Public awareness to the problems of children and adults with disabilities caused by rare diseases, to protect them and assure their integration in society;
3. Establishment of a joint alliance of members on various issues of particular rare diseases in Romania with guidelines aimed at European level;
4. Promoting equal opportunities and access to treatment and services, medical patients with rare diseases.
5. Developing and promoting a national network consisting of key representatives of patient organizations, experts, and community and public institutions;
6. Attracting funds and influencing the economic and administrative structures for the adoption of decisions in the future;
7. Stimulating scientific research in the field of rare diseases - for identifying and implementing the most effective treatments and methods of care;
8. Working with organizations and individuals in the country and abroad, dealing with this issue;
9. Promoting development of new services for patients with rare diseases in Romania.
National context:
• Patients with a rare disease are orphans of the healthcare system in Romania, often without a diagnosis, without treatment, without evidence, therefore no grounds for hope.
• Rare diseases are life-threatening or chronic diseases, with a low prevalence and high levels of complexity. Between 6000 and 8000 diseases were identified, which affect 25 million Europeans. Patients with very rare diseases and their families are particularly isolated and vulnerable. Life expectancy of patients with rare diseases is significantly reduced, and many have disabilities that are the source of discrimination and reduce or destroy any educational, professional or social opportunities.
• Investigation of rare diseases is almost non-existent in Romania.
• Lack of healthcare policies and scarcity of expertise in this area, leads to delayed diagnosis and difficulty in accessing care. National health services for diagnosis, treatment and care of patients with rare diseases differ significantly in terms of availability and quality. European citizens have unequal access to health services and orphan drugs.
6.
2008
● Alliance National Rare Disease Romania was established in August 2007 and began developing a National Plan for Rare Diseases. They were invited into the working groups which included the Ministry of Health, Labor, Education, ANPH, NAM and were involved with groups of experts from home and abroad. Activities for public debate and information were organized
● Organize Campaign "Rare Diseases, a public health priority" (First day of European rare diseases), between February 25-29, 2008.
● Zalau (February 25) – Opening of the official Campaign "rare disease a public health priority", the press conference, presenting the film "Rare People and Rare Diseases”, awarding ceremony of winners of the" rare day for very special people", show offered by children and volunteers of the Big Brother, Big Sister program and exhibition materials;
● In February, all schools in several counties held lessons on "inclusive education" - with school officials.
● During the entire month of February three city lights in Bucharest, Cluj and Iasi were set up.
● Marosvásárhely 19-22 - workshop "Developing a complex system of communication between stakeholders in the management of rare diseases in Romania and Europe" / University of Medicine and Pharmacy, Targu Mures
● Cluj - Napoca (February 27) - Symposium "Possibilities of diagnosis and treatment of rare diseases in Romania – Pediatric Clinic I SRGM;
● Iasi (28.02.2008) - presentation and presentations campaign cases (rare) at the Hospital for children and maternity Cuza Voda, UMF Iasi, Romania Orphanet;
● Oradea - 28.02.08-Seminar "The first day of the European Rare Disease; Partners: UMF Oradea Society Multiple sclerosis Romania, PKU Life Association;
● Timişoara - (29.02.08) - Seminar: "Together for rare diseases"; UMF Timisoara Association "Save the Children / Timis - distributing information materials to UMF, on Market Street and" Closing festive campaign;
● Bucharest - (29.02.08) Round Table "Rare disease - a public health priority in the EU Ministry of Health, the National Presentation of Rare Diseases in the meeting of family doctors / family doctor role in the prevention, identification and management of rare diseases - 29.02.2008
● Session communications scientific problem of rare diseases 28.02.08; Association Adult with congenital heart disease, UMF Carol Davila, the Institute of Anthropology, Victor Babes Institute, IOMC Cantacuzino Institute;
● TVR2 - Autostrada TVR - 26.02.2008, appearances in the media;
● Distribution of informational materials in 28 cities with the help of volunteers from the Peace Corps.
● On February 29, 2008 a partnership agreement with the Ministry of Health was signed to implement the National Plan and in Romania, in July 2008 the Ministry of Health has developed the National hemophilia program in Romania where a number of orphan drugs critical in the treatment of rare diseases were introduced, with 100% compensation for the patients.
● The Ministry of Health organized joint activities with the National Alliance for Rare Diseases in 2008 and was involved in various activities organized: on patients, meeting at Poiana Brasov foundation Coalition for CECAF, Moneasa workshop, TRUST of TRUST, Hemocromatoza seminar, round table for assessment of the National Rare Diseases, "Day Information about the Community Action on Public Health (2008-2013).
● November 15-18 - Board meeting of EURORDIS, National Workshop Europlan - Paris EUROPLAN project was initiated by the Higher Institute of Public Health funded by Italy and the European Commission for a general framework for national strategies for rare diseases - National Plans Rare Diseases in Member States. DORICA Dan was selected Eurordis Europlan advisor in this project.
Europe:
Having regard to the Treaty establishing the European Community, in particular Article 152 (4) second paragraph,
Having regard to the proposal,
Having regard to the opinion of the European Parliament,
Having consulted the Economic and Social Committee
Having consulted the Regions
Whereas:
(1) Rare diseases represent a threat to the health of European citizens to the extent that they are diseases which endanger life or cause a chronic disability, with a low prevalence and a high degree of complexity.
(2) A community action program on rare diseases, including genetic diseases, was adopted for the period 1 January 1999-31 December 2003. In terms of prevalence, this program has defined a rare disease as a disease affecting less than 5 of 10 000 persons in the European Union.
(3) Regulation (EC). 141/2000 of the European Parliament and the Council of 16 December 1999 on orphan medicinal products requires that a drug is designated as "orphan medicinal product" if for diagnosis, prevention or treatment of diseases that endanger life or cause a chronic disability and affecting less than 5 of 10,000 persons in the Community when the application was made.
(4) It is estimated that there are between 5,000 and 8,000 rare diseases exist, which affects between 6% and 8% of the population, meaning between 27 and 36 million people in the European Union. Most of them have very little common disease affecting one in 100,000 or less.
(5) The prevalence of poor specificity and their rare diseases require a global approach based on the combined outstanding efforts to prevent a significant morbidity or premature mortality can be avoided, and to improve quality of life and potential social Eco-affected persons.
(6) Rare diseases have been one of the priorities of the Sixth Framework Program for Research, Technological Development and Demonstration (2002-2006) and remain a priority area for action under the new program, the Seventh Framework Program research, technological development and demonstration (2007-2013) as the development of new diagnostics and treatments for rare diseases, and epidemiological research on these diseases requires international approaches to increase the number of patients involved in each study.
(7) Commission, in its White Paper, entitled "Together for Health: A Strategic Approach for the EU 2008-2013" of 23 October 2007, which defines the strategy for health, included rare diseases among the areas for priority action.
(8) To improve coordination and consistency between national initiatives, regional and local authorities in relation to rare diseases, all relevant national actions in this field must be integrated into national plans to fight rare diseases.
(9) In accordance with the database Orphanet of the 5,863 known rare diseases for which it is possible to identify a clinic, only 250 rare diseases have a code in the International Classification of existing diseases (tenth version). It is necessary to conduct a classification and codification of all appropriate rare diseases to give the necessary visibility and recognition in the national health systems.
(10) World Health Organization (hereinafter referred to as "WHO") launched in 2007 the review process of the tenth version of the international classification of diseases, for the eleventh version of this classification to be adopted in the World Health Assembly in 2014. WHO has designated particular group (Task Force) of the European Union in the field of rare diseases as a consultative group on specific topics (Topic Advisory Group) on rare diseases, to contribute to this review process formulating proposals regarding the codification and classification of diseases rare.
(11) Implement a common identification of rare diseases by all Member States would strengthen significantly the European Union's contribution to the Consultative Group on specific topics and facilitate the cooperation in the field of rare diseases.
(12) In July 2004, a High Level Group on health services and medical assistance was established to gather experts from all Member States to consider practical aspects of cooperation between national health systems in the EU. One of the working groups of the summit focuses on the European network of reference for rare diseases. Several principles were developed, including the role of such networks in the fight against rare diseases and certain criteria that should satisfy such centers. European reference networks should serve also as a center of research and knowledge, treating patients from other Member States and ensuring the availability of treatment units later if necessary.
(13) Value added reference networks inside the European Community are extremely important for rare diseases due to very low incidence of these diseases, which involve a limited number of patients and lack of professional expertise. Increasing knowledge through training at European level is therefore essential to ensure equal access to health care quality for patients suffering from rare diseases.
(14) In December 2006, a group of experts in rare diseases from the European Union has published a report entitled "Contribution to shaping policy: For a European collaboration on health services and medical care in the field of rare diseases "("Contribution to the policy for European cooperation on health services and medical care in the field of rare diseases") to the High Level Group on health services and healthcare. The report stresses the importance of identifying centers of expertise at national and regional levels. Some measures mentioned in this report are included in this recommendation.
(15) Cooperation and exchange of knowledge between the national and regional experts have proved to be the most effective approach to deal with rare diseases in Europe.
(16) National and regional centers of expertise should follow a multidisciplinary approach to care, integrating health and social issues to deal with complex diseases and various rare diseases involved.
(17) Given the specific characteristics of rare diseases - limited number of patients and lack of relevant knowledge and expertise in the field - they can be characterized as a unique area with a high added value of action at Community level. This value can be achieved in particular by bringing together national expertise on rare diseases, which is now prevalent in different Member States.
(18) It is crucial to ensure an active contribution by the Member States to develop some common tools in the Commission Communication on rare diseases, in particular the opinions of European rules on diagnoses and medical assistance and guidelines on screening European population. This should apply to the evaluation reports on the therapeutic value added orphan drugs, which could contribute to accelerating the negotiations on the price level, thus reducing waiting time in terms of access to medicines for patients suffering of rare diseases.
(19) WHO empower patients described as "an essential condition for health" and "partnership and a proactive strategy of self-care patient outcomes to improve health and quality of life among the chronically ill.” In this sense, the groups of patients is crucial, both in terms of direct support for people suffering from disease, as well as the collective work done to improve the situation of patients suffering from a rare disease in general and for future generations.
(20) Patients and patient representatives should therefore be involved in all stages of policy and decisions. Their activities should be promoted and actively supported, including financially, in every Member State.
(21) Development of infrastructure for research and medical assistance in the field of rare diseases requiring long-term projects and therefore an appropriate financial effort to ensure long-term sustainability. This effort would significantly maximize synergy projects developed in the framework of community health (2008-2013), of the Seventh Framework Program for Research, Technological Development and Demonstration (2007-2013) and subsequent to the programs.
ACTIVITIES
Objective 1 and 4:
A1: The inclusion of objectives of the National Plan for Rare Diseases in the national budget of the Ministry of Public Health of Romania (Reference Center, National Registers, specialized services, activities, training of professionals).
A2: The organization of joint activities with the Ministry of Health.
A3: Creating an Interdisciplinary Committee for Rare Diseases at the Ministry of Public Health.
In charge:
1. Dan DORICA - primarily responsible;
2. Dr. Maria Puiu;
3. Leontin Băbţan;
4. Robert Veres;
5. Loredana Simon – secondarily responsible.
Activity/ Deadline/ Place/ Resources/ Individual Responsible
1. MSP Meeting /01.02.09 /Bucharest /Dorica Dan
2. Creating interdisciplinary team /01.07.09/ Romania Project MSP and MSP /NORO Dan Dorica
3. Round table SM /13.03.09 /Bucharest /SSMR Loredana Simion
4. Registre /01.12.14 /Romania /ANBraRo MSP and Dr. Maria Puiu and Loredana Simion
5. Pilot Reference Center for Rare Diseases /01.04.11 Zalău APWR, Home, MSP, ANBRaRo, PMZ, CJS, Greek Catholic Church, UMF Timişoara SRGM, APW Norway FRAMBU Center
Objective 2 and 3:
A1: Annual information campaigns 28/29 February.
A2: Organization of work-shops on the categories of diseases.
a) chromosomal disease;
b) with micro deletion syndromes;
c) constitutional bone diseases;
d) connective tissue diseases;
e) neuro-muscular disease;
f) neurological Diseases;
g) genetic eye diseases;
h) genetic diseases resulting in hearing loss;
i) mitochondrial Diseases;
j) facomatozele;
k) genetic diseases that predispose cancer;
l) blood diseases;
m) kidney disease;
n) metabolic diseases;
a) endocrine diseases;
p) genetic cardiovascular diseases;
q) various syndromes;
In charge:
1. ANBRaRo;
2. Specialists on pathologies.
No.. Activity Deadline Loc Resources Responsible
1. The Rare Diseases - Open 22-28.02.09 Zalău APWR Dan Dorica
2. The Rare Diseases - March 25.02.09 SSMR Oradea Claudia Torje
3. The Rare Diseases - workshops, distributing information materials 22-28.02.09 Romania ANBRaRo All representatives of member organizations
4. CD public debate, the Commission health 05.03.09 Bucharest ANBRaRo Dan Dorica, Maria Puiu, Loredana Simion
5. Workshop with family doctors 27.02.09 Bucharest APWR Dorica Dan
6. Wokshop neuro-muscular disease 01.09.09 Oradea Oradea and ANBRaRo Claudia Torje and Dr.Nadia Radulescu
7. Wokshop metabolic diseases 01.10.09 Bucharest ANBRaRo Disease Foundation and Lizozomale Dr. Katalin Csep and Dr. Remus Giurgiu
8. Wokshop cardio-vascular diseases and blood Oradea December ANBRaRo Association "Alexia" Foundation and "Heart of the Child" and Dr.Cristina Scrypnyk Doina Popa
9. Wokshop diseases ............. 01.02.10
10. Wokshop diseases ............. 01.04.10
11. Wokshop diseases ............. 01.09.10
12. Wokshop diseases ............. 01.11.10
13. Wokshop diseases ............. 01.02.11
14. Wokshop diseases ............. 01.04.11
15. Wokshop diseases ............. 01.09.11
16. Wokshop diseases ............. 01.11.11
17. Wokshop diseases ............. 01.02.12
18. Wokshop diseases ............. 01.04.12
19. Wokshop diseases ............. 01.09.12
20. Wokshop diseases ............. 01.11.12
21. Wokshop diseases ............. 01.09.13
22. Wokshop diseases ............. 01.11.13
23. Wokshop diseases ............. 01.09.13
24. Wokshop diseases ............. 01.11.13
25. Wokshop diseases ............. 01.09.14
26. Wokshop diseases ............. 01.11.14
27. Wokshop diseases ............. 01.09.14
28. Wokshop diseases ............. 01.11.14
Other conferences Workshop "Education rational, emotive and behavioral"
Objective 5 and 9:
A1: Materials and promotion;
A2: TV, broadcast TV and radio, broadcasting movies, success stories (wikirarediseasestories), posters, brochures, guides to good practice (in partnership with the School of Public Health), annual reports, Official Rare Disease, sites and participation in international events in the field.
A3: drafting documents setup (implementation of a draft regional organizational development);
A4: The monthly newsletter for members ANBRaRo.
In charge:
1. Cristina Scrypnyk and representatives of member organizations - principally responsible;
2. DORICA Dan;
3. Loredana Simion.
No.. Activity Deadline Loc Resources Responsible
1. Drafting documents setup 01.04.09 Oradea Loredana Simion
2. Official Rare Disease and Official Campaign 28.02.09 - 2014 Zalău Internet Cristina Scrypnyk
3. Broadcast and film spotlights local and national TV 01.02.09 - 2014 ANBRaRo and Tedy
4. June 26-27 Annual Report 2009 - 2014 Cluj ANBRaRo Dan Dorica (Mihaiela) and Loredana Simion
5. Guide to Good Practice for Family Doctors 27.02.09 Bucharest ANBRaRo and School of Public Health Scrypnyk Cristina, Cristina Isar, Puiu and Maria Cristina Vladu
6. Guidelines for Good Practice on Rare Diseases 2010-2014 Bucharest ANBRaRo and School of Public Health Scrypnyk Cristina, Cristina Isar, Puiu and Maria Cristina Vladu
7. Monthly newsletter for members ANBRaRo. 2009-2014 (30/31 month) Internet ANBRaRo members (rotation West South East-North-Center)
Objective 6:
A1: Creating a department for access to grants and sponsorship;
A2: Development of the interest "Trust of Trust";
A3: Initiation and development of TELETHON for rare diseases in Romania.
In charge:
1. Dr. Maria Puiu - primarily responsible;
2. Loredana Simon – secondarily responsible;
3. Claudia Torje;
4. Dan Dorica;
5. Robert Veres
No.. Activity Deadline Loc Resources Responsible
1. Establishing a strategy for fundraising 15.03.09 Loredana Simion
2. Writing projects 2009-2014 Dr. Maria Puiu, Loredana Simon, Robert Veres, Claudia Torje and Dan Dorica
3. Campaign Trust of Trust "and UNIMPREZA Cluj 2010-2014 Corporate ANBRaRo
Goal 7:
A1: Develop partnerships with national research establishments and international. Activity permanent (open to any initiatives).
In charge:
1. Dan Dorica - primarily responsible;
2. Loredana Simion.
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