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Issue 125, 28 February 2014


Your gateway to trustworthy information on public health

Rare Disease Day 2014: Joining together across Europe for better care

Yann Le Cam, Chief Executive Officer, European Organisation for Rare Diseases – EURORDIS

Yann Le Cam, Chief Executive Officer, European Organisation for Rare Diseases – EURORDIS

We are breaking the isolation and despair of children and adults who are amongst the most vulnerable citizens in our society today. By bringing together all 6000 different rare diseases across Europe, we create a critical mass of 30 million people with rare diseases who can no longer be ignored; we are able to address the common issues faced by patients and their families; we call for public awareness and social justice; and we help shape a favourable environment leading to concrete, positive actions.

The 2008 Commission Communication Rare Diseases: Europe's Challenges, the 2009 Council Recommendation, [...]

In this edition

News from the EU » 
EU Press Releases » 
Reporting from across Europe » 
New publications » 
Forthcoming events » 
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Read the full focus of this edition  »

Also in this focus

Health Programme Projects »

ORPHANET - Reference portal for rare diseases and orphan drugs

EPIRARE - European Platform for Rare Disease Registries

EUROCAT – European surveillance of congenital anomalies

EUROMAC (Registry for people with McArdle Disease and related muscle conditions)

ENERCA - European Network for Rare and Congenital Anaemias

ERCUSYN - European Register on Cushing’s Syndrome

EUROCRINE -European Surgical Registry for Rare Endocrine Tumours

EUHANET – European Haemophilia Network

E-HOD – European Network and Registry for Homocystinurias and Methylation

InNerMed-I-Network – Inherited Neurometabolic Diseases Information Network

EU Health Prize for Journalists – Articles »

'Alen can finally move his little arms', by Meta ńĆernoga, national winner 2012 for Slovenia

'When lupus sinks its teeth into the body, it never lets its victim go,' by Marcela Fuknová, national winner 2012 for the Slovak Republic

'Black balls,' by Tomasz Przybysz-Przybyszewski, national winner 2012 for Poland


News from the EU 

The Scientific Committee on Consumer Safety launches call for information regarding silica (nano).  »

Interested parties are invited to submit information that could assist the Scientific Committee on Consumer Safety in making a safety assessment on the use of silica (nano). All information should be submitted by 31 May 2014.

Stem-cell research to help Europe's growing population of diabetics  »

More than 55 million people in Europe suffer from diabetes, and by 2030, this figure is expected to rise to 64 million. There is as yet no cure, but type 1 diabetes can be treated by transplanting islet cells or even a whole pancreas.

Revision of European Commission Guidelines on Good Manufacturing Practice for Medicinal Products  »

The European Commission has launched the public consultation on the revision of Annex 15: Qualification and Validation. Stakeholders are invited to comment on this draft by 31 May 2014 at the latest.

EU Press Releases 

EU researchers developing electronics and smart systems to help with spinal cord injuries, Parkinson's and other challenges  »

Nano-electronics and smart systems offer hope for new treatments for people with spinal cord injuries, Parkinson's disease, cancer and other health challenges.

Reporting from across Europe 

Malta and Italy sign Joint Declaration on Co-operation in the field of Health and the Medical Sciences  [Malta]  »

Ministers for Health of Malta and Italy sign Joint Declaration on Co-operation in the field of Health and the Medical Sciences, an important step in implementing the existing Memorandum of Understanding between the two countries.

Poland to grant some 500 medical residencies in March  [Poland]  »

Some 500 medical residencies are to be awarded in Poland during the month of March, with priority given to filling residencies paediatrics, paediatric dentistry, child and adolescent psychiatry and neonatology.

Romanian and Italian paediatric cardiologists team up to help children  [Romania]  »

Romanian physicians and nurses in paediatric cardiovascular surgery have been working with Italian specialists to offer operations to children ages 6 months to 15 years who suffer from various congenital heart malformations.

New publications 

Rare Diseases: How Europe is meeting the Challenges  »

This booklet focuses on a group of diseases that are called ‘rare’ but actually affect over 30 million Europeans.

Human health impacts of climate change in Europe  »

The Projection of Economic impacts of climate change in Sectors of the European Union based on bottom-up Analysis states that climate change-attributable deaths will increase significantly over the next 90 years.

Surveillance of surgical site infections in Europe, 2010-2011  »

Surgical site infections are among the most common healthcare-associated infections and are associated with longer hospital stays, additional surgical procedures, treatment in an intensive care unit, and often higher mortality.

Forthcoming events 

Symposium on 'iFightDepression' E-self-management of depression (Brussels, 1 April 2014)  »

The 'Preventing Depression and Improving Awareness through Networking in the EU ' project is developing a self-management tool for coping with depression, thought to be one of the top three causes of disease and disability in the EU.

Public hearing on EMF preliminary opinion to be held (Athens, 27 March 2014)  »

The European Commission is organising a public hearing on the preliminary opinion on potential health effects of exposure to electromagnetic fields, to be held on 27 March.

Conference addresses 'Health in Europe, making it fairer' (Brussels, 18 March 2014)  »

The conference addresses the issue of improving fairness and equity in health in Europe, improving access to health and combatting discrimination in health.

Where bright ideas abound: The European Commission's Innovation Convention (Brussels, 10-11 March 2014)  »

Over 2000 people will attend the 2014 innovation convention, to be opened by President of the European Commission Jose Manuel Durao Barroso. Speakers include Jack Andraka, who invented a cancer detection tool at the age of 15.

Chronic Diseases Summit (Brussels, 3-4 April 2014)  »

This first EU summit on chronic diseases will discuss medical, social and economic benefits of sustainable investments in health and ways to reduce the burden of chronic diseases and to better prevent and manage chronic diseases.

18th annual 'Healthcare innovations' conference (Warsaw, 25 April 2014)  »

The European Commission is one of the supporting partners of this conference on healthcare innovations, organised by the Polish Healthcare Journal for EU health practitioners and researchers involved in eHealth issues.

In the next issue

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