Rare diseases

A disease or disorder is defined as rare in the EU when it affects less than five in every 10,000 citizens. However, because there are so many different rare diseases – between 6,000 and 8,000 – between 30 and 40 million people in the EU, many of whom are children, suffer from rare diseases.

Most rare diseases have genetic origins while others are the result of infections, allergies and environmental causes. They are usually chronically debilitating or even life-threatening. The fragmentation of knowledge about rare diseases and the small numbers of patients affected by a single disease makes it indispensable to work across borders. One of the greatest challenges for sufferers of rare diseases and their families is getting a timely and correct diagnosis. This is an essential first step before treatment options can be explored and the European Commission has developed a number of initiatives to help member states.

One of these is the ORPHANET project which has developed a database listing the descriptions of almost 6000 rare diseases and has become the number one online source of information on rare diseases worldwide. This tool is an invaluable resource for clinicians, health professionals and patients seeking a diagnosis. It is also establishing European Reference Networks (ERNs) to facilitate cooperation between Member States in the development of diagnosis and treatment capacity to provide highly specialised healthcare for rare or low prevalence complex diseases or conditions.

As a result, patients will have easier access to expertise on rare diseases beyond their national border. There will also be national contact points where patients can receive information on where to find the most appropriate treatment for their disease, anywhere across the EU.

For more information about the EU’s policies on rare diseases, click here on http://ec.europa.eu

Assessing chronic disease management in European health systems

The rising burden of chronic illness, in particular the increase in the number of people with multiple health problems, is a challenge to health systems globally. Associated premature mortality and reduced physical functioning, along with higher use of health services and related costs, are among the key concerns faced by policy-makers and practitioners. Delivery systems need to be redesigned so they better coordinate professionals and institutions and actively engage service users and their carers.

This book, Assessing chronic disease management in European health systems explores some of the key issues and provides insights into the range of care models and the people involved in delivering these; payment mechanisms and service user access; and challenges faced by countries in the implementation and evaluation of these novel approaches.

For more information, click here on http://pr4.netatlantic.com

Non-communicable diseases (NCDs) prematurely take 16 million lives a year

According to a new WHO report, 16 million people die before the age of 70 from heart and lung diseases, stroke, cancer and diabetes.

The report, Global status report on non-communicable diseases 2014” urges governments to act to meet global targets and reduce the NCD epidemic. An investment of just US$ 1-3 per person per year could dramatically reduce illness and death from NCDs.

For more information about NCDs and to download the report, click here on www.who.int

Liver disease affects 29 million Europeans

In 2013, liver cirrhosis caused 170,000 deaths in Europe and liver cancer accounted for another 47,000.

However, while many people in Europe are now aware of liver conditions such as viral hepatitis and cirrhosis, there are a number of other liver conditions that are just as damaging to health and quality of life.

The European Association for the Study of the Liver has launched the ‘Research Roadmap for Liver Disease’ (HEPAMAP) and is calling on policy makers to step up their efforts to tackle the disease and its links with lifestyle and other diseases like cardiovascular conditions and     cancer.

To read more about the Association and HEPAMAP, click here on www.epha.org


Cross Border Association of Public Health and Social Medicine

2009 – 2010 This project focused on establishing a cross border Association of Public Health and Social Medicine with colleagues in Kent and Medway and the Somme in France. The cross border Association shared and compared ways of addressing health threats/ challenges, perceptions, community practices and responses to specific health issues – especially in the prevention of long term illnesses and in areas of social exclusion – in children and adults and will also enhance the professional development of participants.

Project objectives:

To establish a cross border Association of Public Health and Social Medicine:

  • To improve our mutual understanding of approaches to health, healthcare and the prevention of ill health in the cross border region.
  • To exchange ideas and experiences with a focus on health inequalities and social exclusion
  • Develop terms of reference for the Association
  • Map areas of common practice
  • Identify areas of good practice
  • Explore innovations in practice using common public health data
  • Develop shared practice in enhancing the public health roles of clinical and other professionals, for example, pharmacists
  • Explore and compare policies.