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EUROPEAN HAEMOPHILIA NETWORK |
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EUHANET is a project aimed at establishing a network of haemophilia centres to work together on a number of related projects to improve the care of European citizens with inherited bleeding disorders.
PARTICIPANTS
The project will be directed from Sheffield in the UK by Dr Mike Makris. There are five associated partners:
- European Haemophilia Consortium (EHC)
- European Association for Haemophilia and Allied disorders (EAHAD)
- University Medical College Utrecht
- Medical Data Solutions and Services Ltd (MDSAS)
- and Fondazione IRCCS Ca’ Granda in Milan
In addition 84 centres from 26 countries have already committed to participating and were part of the original funding application.
FUNDING THE PROJECT
Sixty percent of the funding is provided by the European Commission via its Executive Agency for Health and Consumers (EAHC) and the rest will be raised from industry.
PROJECT DURATION
The project started on 1st June 2012 and will continue until 31st May 2015
EUHANET(file.pdf)
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Researchers seek better understanding of blood disorders
Researchers from Finland and the United States have shed light on the mechanisms at play in certain devastating haematological disorders, paving the way for the development of new disease-specific treatments.
The team, who present their findings in the journal Nature Structural & Molecular Biology, uncovered mutations in a protein structure in enzymes that convert the cell-signalling molecules that regulate blood cell formation.
These small cell-signalling protein molecules are called cytokines and they regulate blood cell formation and activity via a signal pathway mediated by Janus kinases (JAKs), a family of enzymes.
read more: eurordis
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annual EUCERD report
2012 report on the State of the Art of Rare Disease Activities in Europe covers activities up to the end of 2011 and is composed of 5 volumes.
read more: eucerd
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World Federation of Hemophilia World Congress
Date: 8-12 July 2012
Venue: Paris, France
The WFH World Congress is the single largest event in the WFH calendar, and is very important to the global bleeding disorders community. Every second year doctors, scientists, healthcare workers, people with bleeding disorders and haemophilia organisations gather to learn about the latest developments in bleeding disorders treatment, to discuss, to debate and to contribute to a strong global organization and community. This year’s Congress will feature presentations, workshops, and exhibits on cutting-edge trends in research and treatment for haemophilia and other inherited bleeding disorders.
For further details
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Afghanistan project videoclip |
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7th ICORD Tokyo
4-6 February 2012 Convention Hall, University of Tokyo, Japan
V II International Conference on Rare Diseases and Orphan Drugs
A global meeting on international cooperation and public health policies focussing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo.
The themes are:
- Research
- Diagnosis
- Treatment
- Orphan drugs
- Health policies on rare diseases and orphan drugs globally
- Ethical issues and social aspects of rare diseases
- International networking
- Patients' needs
for more information:
http://www.prip-tokyo.jp/icord2012
source: Eurordis |
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February 29 - Rare Disease Day 2012
celebration of the European Rare Disease Day: A Rare Day for Very Special People. The organisation of this awareness Day is coordinated by Eurordis at the European level and by National Alliances at the national level. Many events will take place throughout Europe.
external link |
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2011 |
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source: Eurordis |
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Learning from each other across Europe
Norwegian-Romanian (NoRo) Partnership for Progress in Rare Diseases
After three years of intense work a new service for Romanian rare disease patients is set to open in June 2011. The pilot Centre for Rare Diseases and virtual Rare Disease Training E-University is the first of its kind in Romania and will encompass a day centre for rare disease patients with autistic behaviour, a respite care service and a comprehensive training programme.
read more..
source: Eurordis |
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People living with rare diseases ask for plans
People living with rare diseases ask for plans, or national strategies, in 25 European countries.
Diagnosis
Health professionals have long been so helpless in front of a rare disease that they often did not even dare to make a diagnosis. Not any more. Diagnosis is now available for about 1,900 diseases, though not one single European country can provide all existing tests. Use of existing treatment and drugs has improved. Increased numbers of orphan drugs are now on the market. Rapid progress is made in advanced therapies. Today no one should have the right to say to a family: "nothing can be done". EurordisCare studies* show that diagnosis alone considerably improves quality of life and life expectancy by reducing unnecessary medical interventions, inappropriate treatments (including psychiatric), the birth of other affected children, maladapted family behaviour and the loss of confidence in medecine. No diagnosis: no treatment. For example: gene therapy, recently successful for children born with adrenoleukodystrophy, must be implemented as early as possible in life to prevent irreversible brain damage.
National plans
How to give isolated patients and families equal access to early diagnosis and care? By bringing together all available expertise and resources. In 1993, Denmark organised two centres of expertise for rare diseases, then Sweden and Norway. In 2001, Italy designated regional centres. France implemented the first national plan for rare diseases from 2005 to 2008, soon to be followed by Bulgaria, Romania, Spain and Portugal. Following the Recommendations of the European Council of Ministers, plans are currently in preparation in Germany, Hungary, Ireland, Denmark, Sweden.Everywhere, patients and their associations are playing a key role throughout the process. What do we want in a national plan or strategy? Integration of all initiatives and resources: improved diagnosis linked to better awareness, information, training of professionals, clinical laboratories and centres of expertise; centres of expertise instrumental for research, registries and clinical trials, good practice guidelines, improved social care. Last but not least, long term sustainability of appropriate health and social policies, vital necessity for 30 millions patients affected in Europe by one of the 6,000 to 8,000 rare diseases.
Christel Nourissier General Secretary, Rare Disease Europe (EURORDIS)
source: rarediseaseblogs |
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February 28
Rare Disease Day 2011
celebration of the European Rare Disease Day: A Rare Day for Very Special People. The organisation of this awareness Day is coordinated by Eurordis at the European level and by National Alliances at the national level. Many events will take place throughout Europe.
external link |
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Kyoto, Japan Update
March 15, 2011 15:50 EDT
The Council of ISTH and Society members express sincere sympathy to all who sustained losses in the recent earthquake in Japan. Our Japanese Local Organizing Committee reports that the city of Kyoto is not damaged in any way and, pending further developments, it is anticipated that the ISTH Congress will proceed as planned.
isth2011.com |
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Eurobarometer: Rare disease awareness
The survey, which was conducted amongst 26 574 EU citizens in all 27 Member States between 25 November and 17 December 2010, examined Europeans' awareness and knowledge of rare diseases and their support for policy initiatives and actions taken at national and EU level.
Key findings from the survey:
Strong support for action at National and European level
* Almost all agree that national health authorities should give support to those suffering from rare diseases (96%) and fully reimburse their medication, even if it is very expensive (93%). * 95% agree that there should be more European cooperation, and that those affected should have the right to access appropriate care in another Member State. There is also wide support for introducing national strategies for rare diseases.
Support for improved research, access to care and awareness raising:
* Over 90% of respondents agree that allocating resources for research, access to treatment, communication and patient support is justified. * Almost all (96%) agree that resources should be allocated to help people suffering from rare diseases access drugs. Only 2% were opposed to this. * 60% agree that allocating resources to improve awareness of rare diseases is justified and a further 33% think it is somewhat justified.
Good general understanding, but detailed knowledge and awareness remain low
* 63% chose the correct definition of rare diseases, while a minority (14%) believe that these are conditions that cannot be treated and that nobody cares about. * 17% of those surveyed know someone suffering from a rare disease, but a larger proportion (40%) have never heard of anyone affected.
John Dalli, European Commissioner for Health and Consumer Policy, said: "I am encouraged to see that EU citizens want more European co-operation on rare diseases. This is important, because the required medical expertise may not be available within national borders. On this 4th World Rare Diseases Day, I want to stress that the European Commission is engaged in added value action to help citizens access the care they need across the EU."
Press Release from the European Commission |
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Rare Disease Day 2011
February 28
http://www.rarediseaseday.org |
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2010 |
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7th Bari International Conference (BIC) |
21-24 May 2011 - Pugnochiuso, Vieste del Gargano, Foggia, Italy The meeting is organized by the Milan and Bari Hemophilia and Thrombosis Centers in Italy (P. M. Mannucci and N. Ciavarella) and the Research Center for Arteriosclerosis and Thrombosis of the Scripps Research Institute in La Jolla, CA, USA (Z. M. Ruggeri).
Speakers from the Americas, Europe and Italy will present their updates and original research on haemophilia A and B, von Willebrand factor and disease, factor VIII, factor IX, thrombotic microangiopathies, rare bleeding disorders, haemolytic uremic syndrome, thrombotic thrombocytopenic purpura. |
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Hemophilia 2010 Congress |
The Hemophilia 2010 World Congress will be held in Buenos Aires, Argentina, from Saturday, July 10 to Wednesday, July 14, 2010 |
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56th Scientific and Standardization Committee (SSC) meeting of the International Society on Thrombosis and Haemostasis (ISTH) |
On May 22-25, 2010, 56th Scientific and Standardization Committee (SSC) meeting was held inCairo, Egypt .
Prof. Flora Peyvandi, from the University of Milan, presented data on miscarriages in women affected with RBDs, during the
Scientific and Standardization Committee (SSC) on Women |
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International Congress RARE DISEASES AND ORPHAN DRUGS
Istituto Superiore di Sanità Roma, Italy
22nd - 25th February 2010 |
Professor Flora Peyvandi presented the state of the art of the EN-RBD project and the progress in the development of the Italian registry on RBDs in collaboration with the Italian association of Haemophilia Centres (AICE) |
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EHA CONGRESS 2009 |
On June 4-7, 2009, the 14TH Congress of the European Society of Hematology (EHA) was held in Berlin, Germany.
Dr. Roberta Palla, from the University of Milan, presented the state of the art of the European Network of Rare Bleeding Disorders (EN-RBD) project |
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Data and Information on Women's Health in the EU |
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Feb 2010 |
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This report provides an overview of women’s health issues across the EU and in EEA countries. It highlights gaps and special topics where research and more information are needed. |
source:
E.U Health and Consumers Directorate-General |
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2009 |
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ISTH 2009
XXII Congress of The International Society on Thrombosis and Haemostasis
July 11-16 2009
Boston U.S.A. |
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European Symposium on "Optimal Clinical Use of Blood Components"
April 24th-25th 2009, Wildbad Kreuth, Germany
Professor Flora Peyvandi presented indications for treatment of rare bleeding disorders.
program
presentation
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15th International Meeting of
Danubian League Against Thrombosis and Haemorrhagic Disorders
Belgrade, May 14-16, 2009
danubianleaguebelgrade.com |
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2 nd Annual EAHAD Congress,
Munich Cultural Centre (Gasteig); Munich - Germany
26 th - 27 th February 2009
Professor Flora Peyvandi, on behalf of the European Network on Rare Bleeding Disorders (EN-RBD), presented the state of the art of the EN-RBD project, during the second congress of the European Association for Haemophilia and Allied Disorders (EAHAD).
presentation
EAHAD Munich Program |
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EPPOSI Workshop
March 2009
EPPOSI Workshop on Patients Registries for Rare DisordersNeed for data collection to increase knowledge on rare disorders and optimize disease management and care
Wednesday 18 - Thursday 19 March 2009
Scientific Institute of Public Health
Brussels, Belgium Program |
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Rare Disease Day 2009
February 28
http://www.rarediseaseday.org/ |
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2008 |
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First meeting of the working group |
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Advisory Board on menorrhagia and other gynaecological problems in women affected by bleeding disorders |
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Milan - April 14-15, 2008 |
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Annual workshop of the European Network of rare Bleeding Disorders EN-RBD working group will be held in Copenhagen |
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Denmark on 16th December 2008 |
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www.rbdd.eu |
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