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Заметки редактора журнала Orphanet Journal for Rare Diseases. : 3)В мире : Новости : Информационный портал по редким заболеваниям



3)В мире : Заметки редактора журнала Orphanet Journal for Rare Diseases.
Отправил: Admin_Med [ 23.5.12 15:40 ] Прочитали: 2126.

Заметки редактора журнала Orphanet Journal for Rare Diseases.

Национальные планы по Редким Заболеваниям: Словения принимает стратегию, а Недерланды уже развивают свою, Предложение Великобритании - быть открытыми для комментариев.
National rare disease plans: Slovenia adopts a strategy, while the Netherlands move forward its development process, and a UK proposal opens for comments
В Словении национальный план по редким болезням был официально принят в начал 2012 года. Рабочий план по редким болезням в Словении, который расчитан в ключевых моментах до 2020 года квалифицируется как "возможность для лучшей координации усилий пациентов и всех партнеров, для построения системы охраны здоровья, которая будет полной, доступной, сфокусированной на пациентах и на времени оказания помощи".  

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National rare disease plans: Slovenia adopts a strategy, while the Netherlands move forward its development process, and a UK proposal opens for comments

In Slovenia, a national plan for rare diseases was officially adopted in early 2012. The Work Plan for Rare Diseases in Slovenia, which is designed to serve as a roadmap until 2020, is qualified as “… an opportunity for better coordination of efforts of all partners involved, establishing health care that will be comprehensive, accessible, timely and patient-focused”. The major objectives of the plan centre around the Identification and monitoring of rare diseases; Improving early diagnosis and access to appropriate medical treatments; Mechanisms to improve an integrated approach to rare diseases; and Improving access to information for patients, the general public, and professionals. Amongst identified actions include the establishment of a national registry for rare diseases; establishment of national reference centers integrated with international networks; examining cross-border cooperation for genetic testing and other services; introducing a system of evidence-based clinical guidelines; defining orphan drug policy and developing decision guidelines for competent authorities; identifying additional funding sources for orphan drugs; establishing an umbrella organisation of patient groups; and establishing a national centre for rare diseases in the country. The next identified steps include the development of an action plan for the implementation of the measures and identifying funds.
Consult the plan (in Slovenian)

The Nationaal Plan Zeldzame Ziekten (NPZZ) is a new website (available in Dutch language) developed as an initiative of the Dutch Steering Committee on Orphan Drugs. The goal of the NPZZ website is to collect input from various stakeholders in order to build a Dutch National Plan for Rare Diseases. The website is open to all individuals and/or organisations who wish to have a say in the Netherlands’ rare disease strategy. The Dutch national plan will consist of four main chapters comprising information, care, research and knowledge (education), and therapy. Each of these four central topics will have their own space on the NPZZ website. The same inquiries are made for each of the topics: What resources/structures already exist? What is (still) missing? What should be done to improve the situation? Who is responsible for proposed actions and under what terms? For all aspects of the plan, three cross cutting issues have been distinguished: the patient's voice, the centres of expertise, and awareness.

The NPZZ website makes publicly available all preparatory documents for the National Plan along with other relevant documents and anyone who wishes to can leave a comment on the website. Thus, the building of a national plan for rare diseases is to be a transparent process. The NPZZ website is coordinated by the Netherlands Organisation for Health Research and Development (ZonMw), which has been commissioned by the Ministry of Health, Welfare and Sport to coordinate the input on this website in 2012, following up on the initial work of the Dutch Steering Committee on Orphan Drugs. In November-December 2011 four multidisciplinary expert groups investigated the first two questions for each of the rare disease plan chapters. In January-March 2012, stakeholders started collecting possible solutions for the issues raised and discussing these on the website and in a public hearing. In April 2012, the first concept of the Dutch National Plan as a whole was developed on the basis of the input on the website, from meetings and from the four experts groups. It is scheduled to be presented at a meeting in mid-June. In the autumn of 2012, the focus will be on implementation issues and exploration of the feasibility of the proposed actions in the national plan with appropriate stakeholders. Suggestions for integrating the three interrelated issues (the patient's voice, centres of expertise and awareness) will be addressed in this phase, together with financial aspects and sustainability. The goal is to deliver the final plan by the end of 2012. Stakeholders (especially the patients) will play a crucial role to keep the plan on the agenda and to work on the implementation.
Visit the NPZZ website

Meanwhile, in the UK, response to the Consultation for a Rare Disease Plan, including an Editorial article in the BMJ, seems to indicate that the proposed strategy leaves out several key elements and that some of what is suggested may not be feasible. Criticisms include the absence of a concrete proposal for funding as well as a lack of emphasis on research. The BMJ article finds fault with the assignment of responsibility for commissioning (to provide networks of care for rare disease patients) to the National Health Service. Geographically, the scheme set out in the consultation would be difficult to engineer. At the present time, nationally commissioned services only extend to 60 rare diseases. The authors of the BMJ article suggest that a strategy developed by the Renal Association for rare kidney disorders could be more readily implemented. It calls upon expert groups of clinicians, researchers and patients to work on specific diseases or groups of diseases. The UK Consultation for a Rare Disease Plan is open for comments until 25 May.
View the UK Consultation for a Rare Disease Plan


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