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Issue 171, 23 March 2016


Your gateway to trustworthy information on public health

Tackling rare diseases requires rare degree of cooperation

by Till Voigtländer,  Austrian representative to the Expert Group on Rare Diseases and Expert on the Board of Member States on European Reference networks.

by Till Voigtländer, Austrian representative to the Expert Group on Rare Diseases and Expert on the Board of Member States on European Reference networks.

Patients with rare diseases often suffer from something else that can be as disabilitating as their illness. Isolation. The feeling that no one else knows what they are dealing with, that no one knows how to help them, that investments aren't being made to find effective medicines or even a cure because there aren't enough people who need it.

But although it can feel like it, they are not alone. Even if a rare disease is defined as one that afflicts no more than 1 out of 2000 people, collectively, some 6000 types of rare diseases affect a total of 30 million people in the EU.

And just as no one [...]

In this edition

News from the EU » 
EU Press Releases » 
EU Health Award for NGOs » 
New publications » 
Forthcoming events » 
Reporting from across Europe » 
  Previous editions
  Suggest news and events
  Send to a friend

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


News from the EU 

New members appointed to the European Commission's independent non-food Scientific Committees  »

Thirty-four independent experts were selected as members for the 2016-2021 term, 17 each for the Scientific Committee on Consumer Safety and for the Scientific Committee on Health, Environmental and Emerging Risks. Read their names here.

What's the life expectancy in Europe, at birth and at age 65?  »

European Core Health Indicators (ECHI) on life expectancy at birth and at age 65 by sex have been updated with 2014 data.

Updated indicators provide clearer picture concerning workplace injuries  »

European Core Health Indicators on injuries at the workplace, categorised by sex and age groups, have been updated with 2013 data (ECHI 31), giving a clearer picture of the current situation.

EU Press Releases 

Policy papers place cancer control firmly on national plans  »

The five Member State Platform of the Cancer Control Joint Action (CanCon) is preparing policy papers for decision makers in governments and in the EU on topics that aim at positioning cancer control into planning processes of the member states.

Kick-off held 3 March 2016 for Third Health Technology Assessment Joint Action  »

The Joint Action “EUNetHTA 3” (2016-2019) has 75 partners in 27 EU countries and has been set up to build on achievements of the previous two joint actions and specifically to strengthen cooperation between HTA bodies in the EU and increase and improve joint work.

Professional Hearing Care Makes You Smarter and Healthier  »

The need for lifelong screening for deafness and for adopting public health strategies that can prevent hearing loss were stressed at the European Parliament on 1 March, 2016, just prior to World Hearing Day on 3 March. Some 55 million people in the EU suffer from hearing loss.

EU Health Award for NGOs 

I.S.A.R. Germany (International Search and Rescue)  »

Establishment of two Ebola treatment units in Liberia

International Medical Corps UK  »

Emergency intervention and training initiative to prepare for and manage the Ebola Virus Disease in West Africa

 More information on the Award


New publications 

New infograph clarifies DG Sante's and Chafea's role in the Health Programme  »

What roles do the DG for Health and Food Safety (SANTE) and the Consumers Agency for Food, Environment and Agriculture (CHAFEA) have in the Health Programme 2016 – 2020? This new infograph makes it perfectly clear!

Forthcoming events 

Info Day on European Reference Networks (Brussels, 7 April 2016)  »

Register now to attend in person or plan to watch the livestream if you would like more information regarding ERN and the grant application process.

Reporting from across Europe 

'Purple Ribbon' Day celebrates 5th year of raising awareness about eating disorders  [Italy]  »

The 'Giornata del Fiocchetto Lilla', held annually on 15 March, was founded by a man who lost his daughter to bulemia. The Ministry of Health and a working group of experts are currently writing guidelines for nutritional rehabilitation in the field of eating disorders.

National consultants and medical experts are against the medical use of marijuana  [Bulgaria]  »

After a series of meetings on this topic, the National Drug Council and the Ministry of Health asked for the opinion of experts in nervous diseases, medical oncology, eye diseases, infectious diseases and pain management, among others. Collectively, they weighed in against the medicinal use of marijuana.

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