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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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Rare Disease Day 2012
February 29
www.rarediseaseday.org |
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RE(ACT) CONGRESS 2012
The congress will bring together world leaders and young scientist from university and industry in Stem Cells, Cell Biology, Gene Therapy, Human Genetic and Therapeutic Applications to present cutting edge research, to discuss results and to exchange ideas. Congress goals
- Promote research on rare and orphan diseases among the general public, industry and policy makers
- Bring together researchers and their knowledge
- Helping the understanding of other more common diseases
- Encourage clear insights positions identifiable from the scientific community in university and industry
Main topics
- Gene and Cell Therapy; Stem Cells
- Diagnostics
- Therapeutic Applications
- Genomic Disorders
Scientific disciplines involved
Autoimmunity, biochemistry, cell biology, dermatology, endrocrinology, gastroenterology, gene therapy, human genetic, hematology, infectious diseases, inflammation, molecular and cellular biology, neuroimmunology, oncology, orphan drugs, pathology, pharmacology, primary immune deficiency, rheumatology, transplantation, virology.
RARE IS COMMON
“What we learn from rare disorders often has profound consequences for our understanding of more common conditions”. Francis S. Collins (M.D., Ph.D., NIH Director).
DOWNLOAD THE POSTER OF THE RE(ACT) CONGRESS 2012
ast Updated on Thursday, 03 february 2012 |
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Video on rare diseases
RARE DISEASES CONFERENCE 2011 - Video
A video presenting European initiatives for rare diseases and featuring Commissioner for Health and Consumers was presented at the Rare Diseases Conference 2011.
Video
source: eahc |
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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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| 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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source: Eurordis |
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| "Fostering international collaboration on rare diseases research: launch of the International Rare Disease Research Consortium (IRDiRC)" |
| Flora Peyvandi attended the meeting "Fostering international collaboration on rare diseases research: launch of the International Rare Disease Research Consortium (IRDiRC)" organized by the National Institutes of Health in Bethesda, April 5-8, 2011. She made a presentation on the experience of the EN-RBD network and on the collaboration with the American Thrombosis and Hemostasis Network (ATHN).
http://www.eurunion.org
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| updated on Tuesday, 19 April 2011 09:25 |
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general informations for RBD's patients:
select your language (file.pdf):
English
French
Greek
German
Italian
Turkish
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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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| 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.
Abstracts are welcome from December 2010 until February 28, 2011.
Sign up at www.bic2011.org to receive the programme and updates. |
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Health-EU video gallery
EU funded projects on rare diseases
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Hemophilia 2010 Congress |
| On July 10-14, 2010, the Hemophilia World Congress, World Federation of Hemophilia (WFH) was held in Buenos Aires, Argentina.
Prof. Flora Peyvandi, from the University of Milan, presented the state of the art of the European Network of Rare Bleeding Disorders (EN-RBD) project ( Abstract 1 )
Dr Danijela Mikovic, from the Haemostasis Department and Haemophilia Center, Belgrade, Serbia, presented data on clinical manifestations in women with rare bleeding disorders obtained by the analysis of information on patients entered in the EN-RBD database ( Abstract 2 )
Moreover results on the new bleeding score specifically designed for rare bleeding disorders were presented as a poster ( Abstract 3 ) |
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| 21st International Congress on Thrombosis 2010 |
| Milan, July 6-9, 2010 |
| The Thrombosis Congress, organized by the Mediterranean League Against Thromboembolic Diseases, has an established role and tradition in the field of basic and clinical research on arterial and venous thromboembolic disorders. |
| www.thrombosis2010.org |
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On June 10-13, 2010, 15th
Congress of the European Hematology association (EHA) was held in Barcelona, Spain.
Prof. Flora Peyvandi, from the University of Milan, was invited to describe the general features of RBDs based on data from published scientific literature and on the results of three years of collaboration between 11 European treatment centers in the frame of the project “Establishment of a European Network of Rare Bleeding Disorders: EN-RBD.” A review article was published on Haematologica Journal
http://www.haematologica.org |
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56th Scientific and Standardization Committee (SSC) meeting of the International Society on Thrombosis and Haemostasis (ISTH) |
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56th Annual SSC Meeting
Cairo, Egypt |
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On May 22-25, 20010, 56th Scientific and Standardization Committee (SSC) meeting was held inCairo, Egypt .
Prof. Flora Peyvandi, from the University of Milan, presented the progresses of the European Network of Rare Bleeding Disorders (EN-RBD) project and the preliminary results obtained using a bleeding score system, specifically designed for RBDs, during the
Scientific and Standardization Committee (SSC) on Factor VIII and Factor IX
Scientific and Standardization Committee (SSC) on von Willebrand factor
Moreover Prof. Flora Peyvandi 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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3nd Annual Congress of European Association for Haemophilia and Allied Disorders (http://www.eahad2010.org/)
Edinburgh International Conference Centre
Edinburgh, Scotland
3rd – 5th February 2010 |
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 and the results showed at the recent EN-RBD workshop, held in Athens on 16 th January.
Moreover Professor Peyvandi, made a presentation on treatment of RBDs, particularly focused on FX and FV deficiencies, explaining how it is important to develop treatment products specific for these deficiencies |
Abstract EAHAD congress |
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Rare Disease Day 2010
February 28
http://www.rarediseaseday.org/ |
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| Data and Information on Women's Health in the EU |
| 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 |
download.pdf |
| source: E.U Health and Consumers Directorate-General |
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| EN-RBD workshop 2010 |
| the Annual Workshop of the EN-RBD working group will be held in Athens, Greece on january 16th 2010 |
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