Rare Disease Day 2014: Joining together across Europe for better care
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,
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Also in this focus
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ORPHANET - Reference portal for rare diseases and orphan drugs
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EPIRARE - European Platform for Rare Disease Registries
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EUROCAT – European surveillance of congenital anomalies
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EUROMAC (Registry for people with McArdle Disease and related muscle conditions)
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ENERCA - European Network for Rare and Congenital Anaemias
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ERCUSYN - European Register on Cushing’s Syndrome
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EUROCRINE -European Surgical Registry for Rare Endocrine Tumours
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EUHANET – European Haemophilia Network
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E-HOD – European Network and Registry for Homocystinurias and Methylation
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InNerMed-I-Network – Inherited Neurometabolic Diseases Information Network
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'Alen can finally move his little arms', by Meta Černoga, national winner 2012 for Slovenia
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'When lupus sinks its teeth into the body, it never lets its victim go,' by Marcela Fuknová, national winner 2012 for the Slovak Republic
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'Black balls,' by Tomasz Przybysz-Przybyszewski, national winner 2012 for Poland
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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.
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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.
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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.
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Nano-electronics and smart systems offer hope for new treatments for people with spinal cord injuries, Parkinson's disease, cancer and other health challenges.
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Reporting from across Europe
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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.
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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.
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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.
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This booklet focuses on a group of diseases that are called ‘rare’ but actually affect over 30 million Europeans.
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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.
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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.
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Forthcoming events
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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.
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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.
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The conference addresses the issue of improving fairness and equity in health in Europe, improving access to health and combatting discrimination in health.
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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.
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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.
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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.
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In the next issue
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EU Health Programme
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