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EUROPEAN HAEMOPHILIA NETWORK

 

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

EUHANETpdf_button(file.pdf)

 


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 external link


annual EUCERD report

eucerd

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 external link


World Federation of Hemophilia World Congress

 
Date: 8-12 July 2012
Venue: Paris, France

wfh
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

 

Afghanistan project videoclip
 

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
 

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.

rdd09

external link

 
2011
 

Rare disease events in Europe

source: Eurordis

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

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


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.

rdd09

external link

 

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


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


Rare Disease Day 2011

February 28

 

http://www.rarediseaseday.org

 
2010

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.

Hemophilia 2010 Congress
The Hemophilia 2010 World Congress will be held in Buenos Aires, Argentina, from Saturday, July 10 to Wednesday, July 14, 2010

 
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

 

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)

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

Data and Information on Women's Health in the EU
 
Feb 2010
 
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

 
2009
 

ISTH 2009

XXII Congress of The International Society on Thrombosis and Haemostasis

July 11-16 2009

Boston U.S.A.


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.

edcm logo

program


presentation


15th International Meeting of

Danubian League Against Thrombosis and Haemorrhagic Disorders

Belgrade, May 14-16, 2009

danubianleaguebelgrade.com


 

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


 
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


 

Rare Disease Day 2009

February 28

 

http://www.rarediseaseday.org/


 
2008
 

First meeting of the working group

 
Advisory Board on menorrhagia and other gynaecological problems in women affected by bleeding disorders
 
Milan - April 14-15, 2008
 

 
 
Annual workshop of the European Network of rare Bleeding Disorders EN-RBD working group will be held in Copenhagen
 
Denmark on 16th December 2008
 
www.rbdd.eu
 

 

 
© 2016 Fondazione Luigi Villa