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Issue 85,
23 February 2012
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Joining forces to fight rare diseases
Ruxandra Draghia-Akli, Director, Health Directorate at DG Research and Innovation, European Commission
Health research is a global endeavour with scientists sharing their knowledge with their colleagues around the world, and rare-disease research is an excellent case in point. Despite the fact that rare diseases affect some 30 million Europeans, their sheer variety and number – estimated to be up to 8000 – makes understanding, diagnosing and treating them a daunting task beyond the resources of any one country to tackle.
This is why the EU has taken the lead in launching an unprecedented international effort – the International Rare Diseases Research Consortium (IRDiRC) – to develop 200 new therapies for rare diseases and the means to diagnose most rare diseases by the year 2020. Twenty-two organisations investing in rare disease research from across the globe are currently part of this initiative. They include organisations from Australia, Canada, the USA and several EU member states. Many more are expected to join. And by 2013, the EU will have invested over €420 million into research that contributes to the consortium's objectives.
On 29 February – international Rare Disease Day 2012 – the names of the international experts appointed to serve on IRDiRC's first scientific committees will be announced. They come from different fields, including academia, industry and patient groups, showing the need to involve all concerned as we move forward.
Much work lies ahead of us but, with the current enthusiasm over IRDiRC, the goals we have set ourselves are clearly within reach.
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High level conference on EU Health Programmes: results and future perspectives (3 May 2012) - Register now!
The European Commission will showcase results and success stories from the 1st and 2nd Health Programmes, sharing views and building consensus for HP3.
High level conference on EU Health Programmes: results and future perspectives (3 May 2012) - Register now!
The European Commission will showcase results and success stories from the 1st and 2nd Health Programmes, sharing views and building consensus for HP3.
Commissioner Dalli visits European Medicines Agency in London (6 February 2012)
To mark the occasion, the Commission has launched a video explaining how medication is authorised for use in the EU.
Commissioner Dalli visits European Medicines Agency in London (6 February 2012)
To mark the occasion, the Commission has launched a video explaining how medication is authorised for use in the EU.
Commissioner Dalli promotes "Ex-smokers are unstoppable" campaign in Sofia, Bulgaria (16 February 2012)
See pictures of Commissioner Dalli's visit to Bulgaria – which has the 2nd highest smoking rate in the EU and recently banned smoking in indoor public places.
Commissioner Dalli promotes "Ex-smokers are unstoppable" campaign in Sofia, Bulgaria (16 February 2012)
See pictures of Commissioner Dalli's visit to Bulgaria – which has the 2nd highest smoking rate in the EU and recently banned smoking in indoor public places.
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Denmark
Government proposes a revision of laws on smoke-free environments
This review is an important part of the Danish Government's efforts to strengthen prevention efforts. It is composed primarily of restrictions with regard to children and adolescents.
Latvia
Health Ministry informs citizens about available medical care and services
The "Feeling bad? There's help to be had!" campaign depicts a variety of disease-related situations and explains how to get medical help quickly and efficiently.
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EU joint programming initiative in neurodegenerative disease research – launch of research strategy
Speech by Máire Geoghegan-Quinn, Commissioner for Research, Innovation and Science.
EU joint programming initiative in neurodegenerative disease research – launch of research strategy
Speech by Máire Geoghegan-Quinn, Commissioner for Research, Innovation and Science.
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Alzheimer's Disease International – 27th international conference (London, 7-10 March 2012)
Organised around 3 themes (Science, Fact, Fiction), the conference targets professionals, scientists, researchers, policy makers, people living with dementia and staff & volunteers of Alzheimer associations.
6th European conference on rare diseases and orphan products (Brussels, 23-25 May 2012)
Organised by Eurordis with the support of DG SANCO, the conference will give stakeholders the chance to meet, exchange ideas and promote cooperation in the fight against rare diseases.
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Health Economic Assessment Tools for walking and cycling – methodology and user guide
Published by WHO-Europe, this booklet proposes tools, guidance and methodology for the economic assessment of transport infrastructure and policies in relation to the health effects.
Health Economic Assessment Tools for walking and cycling – methodology and user guide
Published by WHO-Europe, this booklet proposes tools, guidance and methodology for the economic assessment of transport infrastructure and policies in relation to the health effects.
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World Rare Diseases Day (29 February 2012)
Activities at EU level
Health-EU – Rare diseases
European Commission – DG Health and Consumers
Europe for Patients campaign – Rare diseases
European Commission – DG Health and Consumers
Public Health – Rare diseases
European Commission – DG Health and Consumers
Research – Rare diseases
European Commission – DG Research and Innovation
IRDiRC - International Rare Disease Research Consortium
IRDiRC - International Rare Disease Research Consortium
News
World Rare Diseases Day (29 February 2012)
Under the coordination of Eurordis, hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities around the slogan “Rare but strong together”. In Europe, national alliances in 25 countries are taking the lead.
World Rare Diseases Day (29 February 2012)
Under the coordination of Eurordis, hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities around the slogan “Rare but strong together”. In Europe, national alliances in 25 countries are taking the lead.
"Rare but strong together" - promotional video
On the occasion of World Rare Diseases Day, Eurordis has launched a video aimed at increasing awareness of rare diseases around the world.
EU Health Prize for journalists – Articles
"Factor VIII" by Jana Kollarova – national winner 2011 for Slovak Republic
The story of Blanka Halčinová, her family and their fight against haemophilia, a hereditary disease that has been passed to both sons.
"The Curse of San Bartolomé", by Senne Starckx, national winner 2011 for Belgium
In a remote village on Gran Canaria, over the course of several decades, dozens of children died from sudden cardiac arrest. Only now have cardiologists solved the mystery of San Bartolomé de Tirajana…
Read more articles by the national winners of the EU prize for journalists
Health Programme Projects
Video: EU-funded projects against rare diseases
Overview of EU action and reasons the EU supports the fight against rare diseases through projects funded by the Health Programme.
Video on rare diseases in the EU
Video on European initiatives to fight rare diseases featuring John Dalli, Commissioner for Health and Consumers.
Successful rare-disease projects
This brochure presents a range of successful projects that bring real EU added value to national efforts to tackle rare diseases.
EPIRARE - European Platform for Rare Disease Registries
General objectives of the platform: build consensus and synergies to address regulatory, ethical and technical issues associated with the registration of rare-disease patients and elaborate possible policy scenarios.
ENERCA - European Network for Rare and Congenital Anaemias
This project seeks to facilitate the treatment of patients suffering from rare anaemias.
EURO-HISTIO-NET 2008 - reference network for Langerhans cell histiocytosis and associated syndromes
The project aims to set up a network for reference centres organising care and clinical research for Langerhans cell histiocytosis and associated syndromes in EU member states.
ERCUSYN - European Register on Cushing’s Syndrome
The project aims to establish a European registry of patients with Cushing’s syndrome and develop guidelines for the care of patients.
Other interesting links
ORPHANET - database of rare diseases and orphan drugs
EURORDIS - European organization for rare disorders
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