Today, May 8, is International Thalassemia Day. Today, we seek to enhance the awareness and knowledge of thalassemia and other hemoglobin disorders. Hence we appreciate the words of the EU commissioner of Health, Tornio Borg, who emphasizes the importance of prevention and research to improve the life of people suffering from this debilitating blood disorder.
‘There is cause for hope’ according to the commissioner. ‘Thanks to improved technology, medical advances, and the work of dedicated organisations, people with Thalassaemia are living longer. I am confident that with the cooperation and commitment of all actors in the field we will continue to improve the life of people suffering from Thalassaemia’.
EHA fully supports Thalassaemia International Federation who call upon all concerned today to stress the importance of ‘The right for quality health care of every patient with Thalassemia: major and beyond’.
The introduction of a European Hematology Association-Theme of the Year in June 2012, focusing on Quality of Life (QoL) in Hematology, was successful in stimulating awareness, conference sessions, publications, and reports.
The conclusion, in June 2013, of this year’s theme includes two editorials in Haematologica entitled “Patients’ needs in hematology: whose perspectives?” and “Age and Aging in blood disorders: EHA Theme of the Year 2013-2014’’. The Scientific Working Group Quality of Life and Symptoms will organize a SWG Session “Implementation of treatment related patient-reported outcomes in routine clinical practice in hematological malignancies”. Although each theme of the year is introduced to highlight a certain topic in hematology, the themes will remain active. Therefore, Quality of Life will stay on the agenda.
Personalized medicine and hematology have strong links. As one of the few medical specialties to do so,hematology has developed successful personalized medicine strategies and has managed to actually increase cure rates. It looks as if the future of research into blood disorders will yield more and more subtypes of diseases that will necessitate more personalized diagnoses and treatments. EHA is a member of the European Alliance for Personalized Medicine (EAPM) to work together with other academics, healthcare professionals, payers, patients, and industry representatives to accelerate the development, delivery and uptake of personalized medicine and diagnostics. Last week, this alliance organized the Irish Presidency Conference on ‘Innovation and Patient Access to Personalised Medicine’ in Dublin.
From the conference, the following press statement is released:
There are many myths out there. Today, on World Cancer Day 2013, you can get the facts. One and a half million premature deaths per year, among them from hematological malignancies, could be prevented.
The Leukemia Patient Advocates Foundation, the legal host of the CML Advocates Network, proudly announced the launch of phase 2 of its International CML Adherence Survey. The survey was launched in 12 countries on International CML Awareness Day (22 Sept 2012). As it is organized by the non-profit patient community, this research work urgently needs your support now: If you are a CML patient treated with TKI, please participate. If you are a doctor treating CML patients: Please encourage your patients to participate!
BRUSSELS, September 18 2012:
Today, Nessa Childers, MEP hosted the launch of the Manifesto of the European Alliance for Personalised Medicine in the European Parliament.
The Manifesto sets out both the opportunities and challenges of ‘a targeted approach to the prevention, diagnosis and treatment of disease based on an individual’s specific profile’ - what is known as personalised medicine.
Currently available treatments for disease have revolutionised health in Europe and beyond, but science has now brought healthcare to the brink of another major evolution.
By a combination of molecular medicine and computer technology, it is becoming possible for screening of patients, early treatment, or prevention to be calibrated precisely, to deliver with maximum effectiveness. With personalised medicine, healthcare services will ensure the right intervention to the right patient at the right time - improving patient outcomes, reducing the likelihood of adverse events, and cutting down unnecessary treatments.
AMSTERDAM – June 16, 2012 –The European Hematology Association (EHA), the American Society of Hematology (ASH), and the European Cancer Patient Coalition (ECPC) joined today in issuing a common call to action in an effort to mitigate shortages of hematologic drugs in Europe, the United States and around the world. The collective made the announcement today following the EHA-ASH Joint Symposium at the 17th EHA Congress in Amsterdam which was dedicated to the drug shortage crisis.
On March 11, 2011, H-Net met in Brussels. H-Net is the European Network for Harmonisation of Training in Haematology and is funded by a Leonardo da Vinci Grant from the European Commission, DG Education and Culture. The meeting was attended by most of its partnership which includes the European Hematology Association (EHA), the European School of Haematology (ESH), 23 national societies for Haematology in Europe, and the universities of Liverpool and Uppsala.