Wednesday, December 11, 2013

As the end of 2013 approaches, what is the status of EU national rare disease plans?

As 2013 draws to a close, EU countries are busy formulating, adopting, implementing, or renewing their strategies for providing care and services to rare disease patients as urged via the Council Recommendation of 8 June 2009 on an action in the field of rare diseases.

On 22 November 2013, the United Kingdom Department of Health released the UK Strategy for Rare Diseases, targeting five key areas: Empowering those affected by rare diseases; Identifying and preventing rare diseases; Diagnosis and early intervention; Coordination of care; and Research. The strategy presents a blueprint allowing the four UK countries (England, Scotland, Wales, and Northern Ireland) to create and harmonise their plans, which are due to be published at the end of February 2014. In parallel with the launch of the UK Rare Diseases Strategy, a Rare Diseases Translational Research Collaboration (TRC) is being established in the UK, with a four-year investment of £20 million.

In the Netherlands, the Ministry of Health adopted the final version of the Dutch National Plan for Rare Diseases on 10 October 2013. Stakeholders gathered in mid-November for a EUROPLAN National Conference appropriately entitled “And Now?”, featuring results-oriented workshops on areas of the Dutch plan that require further clarification, as well as existing bottlenecks. The event focused on the main areas of the national plan, including: Implementation; European cooperation; Diagnosis and research; Quality of life; Strengthening the patients’ voice; Centres of Expertise; and Access to medicines.

The European Project for Rare Diseases National Plans Development (EUROPLAN), through the EUCERD Joint Action, helps countries define their rare disease priorities and undertake the process of elaborating a national strategy involving all relevant stakeholders. The EURORDIS National Rare Disease Policy website section and the EUROPLAN website contain documents - including content guidelines, national conference details, consultation results, concept papers, draft strategies, and published plans - from over two-thirds of the 28 EU Member States in response to the Council Recommendation, and more are expected in coming months. The European Commission is due to issue a report in early 2014 on the status of the implementation of the Council Recommendation based on a survey of EU Member States.

It is too soon to assess the quality of the policy measures and actions taken through the national rare disease plans as well as to have an informed opinion on the robustness of the budgetary approach embedded into these plans for their full impact and sustainability. However, we can already praise the overall dynamic which is real and well-coordinated across Europe. We are moving toward an integrated EU-national strategy, comprehensive from research to care, focused on a few essential building blocks such as information, centres of expertise, registries, and access to medicines,” declares Yann Le Cam, Chief Executive of EURORDIS and Vice-Chair of the EU Committee of Experts on Rare Diseases. “In coming years, the Committee of Experts on Rare Diseases, involving all EU Member States and observer countries, will play a leading role hand-in-hand with the European Commission to pursue efforts in the right direction. And EURORDIS will be vigilant and supportive to make sure future developments address patients’ and families’ needs.”

One welcome bonus of the European Union call and momentum to develop national strategies on rare diseases is that its message has spread beyond the European Union with countries in Europe such as Georgia, Norway, Serbia and Russia, and countries around the world such as Australia, Brazil, and Canada, drafting strategies responding to the needs of their people living with a rare disease.
For more information, you can also refer to the most recent version (July 2013) of the excellent annual EUCERD Reports on the State of the Art of Rare Diseases Activities in Europe.

Louise Taylor, Communications and Development Writer, EURORDIS


Tuesday, December 10, 2013

Antilope gives guidance to further eHealth interoperability in Europe - Guidance documents now available

ANTILOPE drives eHealth interoperability in Europe and beyond. Between 2013 and 2015 key national and international organisations will work together to select and define eHealth standards and specifications. They will create, validate and disseminate a common approach for testing and certification of eHealth solutions and services in Europe.  Read more

Today the EU-funded Antilope project released guidance documents and educational material to further eHealth interoperability in Europe. The documents build on the European Commission’seHealth Interoperability Framework Study released in July 2013, and are intended for national, regional or project based deployments. They offer guidance and definitions including 

(1) a set of clinical use cases, 
(2) a quality management approach for eHealth solutions, 
(3) an overview of available testing tools, and 
(4) a suggested approach to quality-label or to certify eHealth solutions. The documents are available for download at

Our project and our documents offer a roadmap towards European eHealth interoperability, while respecting where we are today, where international standards and profiles exist alongside national realities and legacies,” says Ib Johansen from Medcom, coordinator of the Antilope project. “We will now take these documents to the European regions and Member States for discussion and feedback.”

The Antilope project is about the need for an interoperability framework in which national, regional and local deployments converge as much as possible, while taking into account local, regional and national specificities,” says Benoît Abeloos, Project Officer at the European Commission’s DG Connect. “We wish the project good success, and call on national and international stakeholders to become engaged.”

Over the next twelve months the Antilope project will organise at least ten regional workshops all over Europe. During these workshops the guidance documents will be shared and discussed with local and regional stakeholders and national and international experts. The workshops will serve to improve awareness and possible adoption, while the discussions will feed back into the final guidance documents to be released in December 2014.

The first regional workshop will take place on 21 January 2014 in Odense, Denmark, primarily for Nordic and Baltic countries.  The second workshop will be held 20 February 2014 in Bratislava, Slovak Republic.  Although all events will be by invitation only, the project calls on all interested parties to register their interest on the project website


Wednesday, December 04, 2013

Use of medication has risen dramatically in OECD countries

The use of medication in highly developed countries is on the rise. Across the 34 OECD countries, the average use of antidepressants increased between 2000 and 2011 from 35 to 56 daily doses per 1,000 inhabitants. This was stated in the OECD report "Health at a Glance" published in Paris.

In none of the countries did the use of antidepressants decrease over the past years. The highest consumption was registered in Iceland - here doctors prescribed antidepressants to more than every tenth inhabitant. In Great Britain, the OECD attributes the rising consumption to the financial crisis. "These extensions have raised concerns about the appropriateness of prescriptions", the report stated. Antidepressants are prescribed more frequently for milder cases, such as anxiety and social phobias, and in general, treatments are more intensive than before.

The prescription rate for medications against elevated blood sugar levels was similar to that for antidepressants. Here, the OECD average amounts to 60 doses daily, and the highest rate was registered in Finland with 84 daily doses. The increase was attributed to the spread of obesity.

Over the past 40 years, life expectancy across all OECD countries has increased significantly and has now reached an average of more than 80 across the entire region. Among the 65 year-olds, a woman may, on average, expect to live another 20,9 years and a man another 17.6 years.

Tuesday, December 03, 2013

eHealth Forum 2014 : Athens, May 12-14

The Greek Presidency of the EU Council drives the eHealth Agenda forward focusing on the implementation of innovative services for better patient care and wellness. It’s about reforming healthcare services delivery and maximizing health and economic benefits for society.


eHealth Forum 2014 brings together the High-Level Conference on eHealth and Technologies for Active and Healthy Ageing, associated events and Exhibition, the eHealth Network Meeting of senior policy makers and state secretaries, the 4th EU-US eHealth Marketplace and more, aspiring to become a true forum for the exchange of experience, mutual support and good practices.

Towards efficient healthcare, social wellbeing and growth opportunities


eHealth Forum 2014 aims to inspire for eHealth solutions leading to functional reforms of healthcare systems, enabling access to better care and quality of life. At the same time eHealth Forum 2014 will emphasize on the importance of deploying innovative eHealth services for growth opportunities and job creation. 

European Innovation Partnership on Active and Healthy Ageing and Reference Sites


eHealth is the backbone for the provision of patient-centric, high quality services to all, especially the elderly and those with chronic diseases. The pillar of eHealth Forum 2014 is the progress achieved in addressing the challenge of ageing through joining forces to advance innovation. The Action Groups and Reference Sites of EIP on AHA will share the progress of their deliverables and discuss next steps towards concrete solutions for a healthier ageing population, one of the most prominent challenges of the social care systems.

4th EU-US Marketplace & Cooperation Assembly


The goal of the Marketplace is to create new business relationships, research, innovation and collaborations leading to innovative health improvements and economic development, in the framework of the EU-US MoU on Cooperation Surrounding Health Related Information and Communication Technologies.

Innovative Healthcare throughout the Ecosystem: Progress through Action


eHealth Forum 2014 offers the opportunity to bring together the international actors and stakeholders by investing in multi-sector partnerships and eHealth ecosystems.

Challenges: eHealth as an enabler for change and sustainability of healthcare systems


The effective use of innovative technologies in the health sector is a big challenge and at the same time an opportunity towards an efficient and sustainable healthcare system. The eHealth Forum 2014 aims at demonstrating that investing in Health IT is the most cost-effective solution for managing healthcare systems.

We look forward to welcoming you in Athens so please note the dates: May 12-14.

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