March 2014 | Volume 11, Issue 1
Dear Friends,
Many exciting activities have occurred over the course of this month. TIF has completed a delegation visit, to Vietnam, and we have finalised the 8th of May toolkit and video cartoon! We will leave you to continue reading our newsletter and we hope you enjoy what you read!
Editorial Team
TIF Around the World

In view of strengthening the cooperation with the Vietnamese Thalassaemia Association (ViTA), TIF, represented by Dr Michael Angastiniotis, TIF medical advisor, materialised a delegation visit in Vietnam on 4-7 March 2014, following an invitation from ViTA in order to discuss further joint action.

A series of workshops and meetings with parents/patients, health professionals, and officials of the Ministry of Health were conducted. Furthermore, the Ministry of Health has expressed its support for the development of necessary services for thalassaemia. During the meeting with the deputy Minister of Health, TIF has expressed an interest in organising a side meeting to the 12th Association of South East Nations' (ASEAN) Health Ministers' Meeting that is scheduled to be held in Hanoi, Vietnam, in September 2014.

This will be a very big step towards spreading awareness for thalassaemia among the member states of the Association for the Southeast Asian Nations (ASEAN) and towards initiating collaboration with the Health Ministries of these states for the establishment and improvement of control programs for thalassaemia.

TIF Executive Director, Dr Androulla Eleftheriou, has been invited to participate in the the Global Partners' Meeting on Hepatitis, organised by the World Health Organisation (WHO), in Geneva, 27-28 March 2014. The main topics of discussion included the current status of the hepatitis worldwide, and future actions for enhanced hepatitis control worldwide.

This meeting has brought together representatives from international organizations such as the European Centre for Disease Prevention and Control (ECDC), the Agence Nationale de Recherche sur le Sida et les hépatites (ANRS), the World Bank, the Global Alliance for Vaccines and Immunization (GAVI) and the Viral Hepatitis Prevention Board (WHPB), among others.

In addition, non-governmental organizations such as the Coalition for the Eradication of Viral Hepatitis in Asia Pacific (CEVHAP), the European Liver Patients Association (ELPA), the Medécins Sans Frontière (MSF), the Médecins du Monde (MdM), the Treatment Action Group (TAG) and the Union for International Cancer Control (UICC) also participated, advocating on behalf of the patients community.

TIF will be participating in the EUPATI 2014 Workshop , which is to take place on the 2 April 2014, in Warsaw, Poland. The EUPATI project aims to create a patient expert programme focused on knowledge about the process of therapeutic innovation and drug development. This 2014 workshop has been designed to draw on the research work effectuated in 2013 by the project, involving patients and citizens across Europe, and to get views on successful examples of information sharing.

To find out more about the full agenda, please go to www.eupati2014.com.

TIF has been invited to attend the Regional conference on the Cross Border Healthcare (CBHC) Directive, which will take place on 7-9 April in Athens, Greece, under the auspice of the Greek Presidency of the Council of the European Union. Stakeholders are expected to learn and share experiences about how the Directive works for patients and how they can contribute to strengthen the patient's perspective.

TIF Publications

We are pleased to announce that the following titles went live on the NLM Bookshelf site:



Regional News
In Bhopal, India, the M.P.Council of Science & Technology and the Department of Biotechnology, RKDF University co-organised the "Hands- on- Training in Molecular Analysis of Haemoglobinopathies", promoted by the Global Research & Welfare Society in Bhopal (GRWSB), on 3- 8 March 2014 at the Department of Biotechnology of the RKDF University, in Gandhi Nagar, Bhopal. This one week lecture workshop intended to bring forth the most up-to-date developments in the field Haemoglobinopathies. Participants benefited greatly from attending this workshop, having interacted closely with experts in the field of Molecular and Medical Biotechnology of Haemoglobinopathies. The participants also had the opportunity to discuss important aspects of Molecular and Medical Biotechnology, especially incorporating cutting-edge technology.

Furthermore, the Thalassaemia Children Welfare Society organised a Workshop in Ulhasnagar entitled "Thalassaemia Major Patients Can Live Normal Life" at Ulhasnagar, on 25 January 2014. Dr Agarwal & Dr Vijay Ramanan, conducted this workshop in a very patient friendly easy language, covering mostly all aspects of better transfusion, quality chelation, BMT, hydroxyurea, wheat grass, gene therapy as well as problems related to Transfusions and Chelation.

More than 50 Doctors and 150 Thalassaemia Major Patients with their Parents attended this Workshop. Dr Agarwal and Dr Vijay Ramanan supported expenses for this workshop.

Τhe 16th International Haemovigilance Seminar (IHS) was held in Barcelona on 5 to 7 March 2014. The Board of the Spanish Society of Blood Transfusion (SETS) in collaboration with the Board of the International Haemovigilance Network (IHN) have organised this meeting and elaborated the scientific programme. The meeting also had the support of the Spanish Ministry of Health and the Health Department and the Blood Transfusion Centre in Catalonia.

During the course of this meeting, various aspects related to Haemovigilance were covered in the context of blood donation and blood donors, blood processing, blood transfusion and optimal blood use, as well as new subjects.

The 6th Global Patients’ Congress of International Alliance of Patients Organisations (IAPO), took place on 28-30 March, in London, UK. The 6th Global Patients Congress has brought together expertise and experience in how to build patient-centred healthcare globally. The Congress provided a global platform for high level policy debate, knowledge and skills building and opportunities for exchange and networking. The theme of the 6th Global Patients Congress was: Better access, better health: A patient-centred approach to universal health coverage.

We are delighted to share the Programme for the 6th Global Patients Congress, where you can find the session details, and more information on the Congress.

On 11 March in 2014, the Nineveh Thalassemia Association (NTA) welcomed talented and gifted fifth grade students from different schools of Nineveh, where they met with the Vice President of the NTS. The students also had the opportunity of a tour of the Thalassemia Center Hospital in Ibn Al Atheer .

During the meeting the students also benefited from a lecture regarding thalassaemia in Mosul, and the role of the Nineveh Thalassemia Association (NTA) in the improvement and development of the prevention and clinical management of thalassaemia, with emphasis on the need to seek volunteer work. Students were encouraged to specialize in key areas that concern haemoglobinopathies.

In the margins (but not the formal programme) of the EU Innovation Convention in Brussels on March 10th, DSW along with the European Public Health Alliance (EPHA), the European Federation of Pharmaceutical Industries and Associations (EFPIA), and PATH  organised a panel discussion  on the pivotal role patients should play in creating innovative, affordable and quality technologies and products for poverty-related and neglected diseases.
Panellists from the European Parliament, the European Commission, patients’ rights organisations and industry had the opportunity to discuss with policy-makers, industry representatives, and non-profit product developers how to promote the alignment of patients’ and populations’ unmet needs with product innovation and development.

The 2014 Careum Congress was held in Basen, Switzerland, on 17-18 March. It was intended for all those working for a healthcare system, which places patients at its centre: patients, professionals, governments, civil society and business. The theme of the 2014 Congress is: 'The power of patients 3.0: Patients are changing the face of health care'.

Through keynotes, symposia, panels, workshops and the use of social media the international congress explored best practice examples and discussed the policies required to movean innovative agenda forward; the mind shift required of politicians, patients and professionals; the need to invest in health literacy of citizens and to ensure access and support to disadvantaged population groups; and the roles and responsibilities of the various health actors including health insurers, professional  organizations and business.

For more information please, click on the following link

Ms. Claudia Rutt , former CEO of the German Bone Marrow Donor Center (Deutsche Knochenmarkspenderdatei gGmbH - DKMS) in Germany, visited Sri Lanka on the 15 January 2014. Ms. Rutt was received by the Lanka Thalassaemia Circle, where she was welcomed by thalassaemic children. She participated in the Confirmatory assembly of the Lanka Thalassaemia Circle. DKMS swabs were taken to determine the HLA compatibility between thalassaemic children and their siblings, for future bone marrow transplantations.

Our 8th of May Cartoon video is finally out!
We are delighted to announce that our cartoon video for the 8th of May 2014 has been finalised!! 7 facts about thalassaemia, a cartoon video created by TIF in the context of the 8th of May 2014 is an amusing video aaiming to spread awareness about thalassaemia.

Use it to spread awareness about thalassaemia. Click here to view it!!

Join our International Photography Contest for the International Thalassaemia Day 2014!

TIF is pleased to announce the launch of an International Photography Contest for the Thalassaemia International Day 2014!

The subject of this photography contest is based on this year's theme for the 21st International Thalassemia Day, which is "Economic Recession: Observe – Join Forces – Safeguard Health, the right for quality health care for every patient"

Send your photographs to TIF by Friday, April 18, 2014 at thalassaemia-lp@thalassaemia.org.cy

The prizes granted by Thalassaemia International Federation for this competition are the following
The first winner - $ 500,
The second winner - $ 300
The third winner - $ 100

More information has been uploaded on our website!

Join us for the 4th Pan European Conference on Haemoglobinopathies & Rare Anaemias! 
Contact us for  more information at thalassaemia@cytanet.com.cy

8th of May toolkit!
We are excited to announce that the 8th of May 2014 toolkit is finally out!! Our toolkit contains videos for the 8th of May, a poster, a bannerand the 8th of May message from TIF's President, Mr Panos Englezos. Please visit our website at the flowing link to download our kit!!


It is our pleasure to announce that TIF will be an official exhibitor in the next European Association of the Study of Liver Disease (EASL) Conference, on 9-13 April 2014, in London, UK. This year’s conference will celebrate 49 years of achievements in the fight against liver disease.

The International Liver Congress™ (ILC) 2014 will build on its record breaking success by providing multiple opportunities to exchange expertise and network. An outstanding and attractive programme to enhance the scientific and educational contents for an ever growing number of international delegates has been drafted.

European Parliament Elections!
We are delighted to announce that Dr Androulla Eleftheriou, TIF Executive Director, has been nominated as a candidate for the upcoming European Parliament Elections, which will be held in all Member States of the European Union (EU) between 22 and 25 May 2014. Dr Eleftheriou’s nomination provides an excellent and unique opportunity to highlight through the mass media and other official channels, issues concerning thalassaemia and other Hb disorders in Europe but also worldwide.

With the adoption of the Third Health Programme for 2014-2020, the European Union is entering into a new phase for supporting action on public health. The programme is the key tool to support EU health policy, to foster cooperation with Member States and health stakeholders and to help improve health outcomes across the European Union. The programme is designed to support and complement Member States’ action in areas where cooperation at EU level is either indispensable or provides important added value.

This cooperation becomes increasingly important in the current economic context. Member States are under pressure to strike the right balance between providing universal access to high-quality health services and respecting budgetary constraints. In this context, more than ever, Member States have much to gain from action under the Programme to exchange knowledge and good practices, to un-lock the potential of innovation in healthcare and to foster prevention.

With this new programme, we will be able to strengthen action to promote health and prevent diseases; to be better prepared to protect citizens against health emergencies and to coordinate responses at European level; to support public health capacity-building and contribute to innovative, efficient and sustainable health systems; and, last but not least, to improve people's access to medical expertise for specific conditions and to improve healthcare quality and patient safety.


Research & Therapeutic News

Group releases guidelines for treating sickle cell patients with pulmonary hypertension 
The American Thoracic Society has issued new guidelines on how to identify, manage and treat sickle cell disease patients at higher risk of death from pulmonary hypertension. The group recommends hydroxyurea treatment, but chronic transfusion therapy should also be considered in certain cases. The guidelines were published in the American Journal of Respiratory and Critical Care Medicine. (AABB 19/03/2014)

Data review 50% of hepatitis C cases are undiagnosed
There are an estimated 3.5 million people in the U.S with chronic hepatitis C infection but just 50% have had a diagnosis and are aware of it., University of Pennsylvia researcher Dr Baligh Yehia reported at the 2014 Conference on Retroviruses ad Opportunistic Infections. Data from even studies 46% hepatitis C patients had access to outpatient care, 17% had received antiviral therapy and 9% had achieved a sustained viral response. (AABB 19/03/2014)

HIV patients with hepatitis C benefit from drug combination
A combination of Merck & Co.'s experimental oral hepatitis C drugs MK-5172 and MK-8742 was safe and effective in treating HIV-positive patients who also had hepatitis C, according to a Phase II clinical trial presented at the Conference on Retroviruses and Opportunistic Infections. After 12 weeks of treatment, 90% of patients had no detectable hepatitis C virus in their blood. (AABB 06/03/2014)

Advances in sickle cell care help manage condition 
Sickle cell disease is starting to become a manageable illness with the emergence of new treatments and research. Hydroxyurea boosts patients' ability to produce fetal haemoglobin, and new anti-inflammatory drugs and procedures such as half-matched bone marrow transplants and gene therapy have all shown promising results. "Research is on the cusp of really nailing this disease. But we have a lot of work to do in terms of awareness," said Shanta Robertson, executive director of the Maryland Sickle Cell Disease Association. (AABB 04/03/2014)

The Effect of Rivaroxaban in Sickle Cell Disease
Studies are being conducted with the aim of providing evidence regarding the inhibition of factor Xa with rivaroxaban will reduce inflammation, coagulation and endothelial cell activation, and improve microvascular blood flow in patients with sickle cell disease (SCD) during the non-crisis, steady state. (ITHANET 12/03/2014)

Effect of Deferasirox on Endocrine Complications in Subjects With Transfusion Dependent Thalassemia (CENTAurus)
The CENTAurus trial is being conducted in a prospective clinical study designed to address systematically some of the relevant endocrine complications in an iron overloaded thalassemic population, primary objective being the assessment of the effect of deferasirox therapy on glucose metabolism/homeostasis. Other endocrine parameters complementary or supportive to the primary objective will be assessed and analyzed during this study. A number of lab parameters related to other axes of the endocrine system will be collected and analyzed. (ITHANET 12/03/2014)

Utility of Fibroscan in Estimating Hepatic Iron Concentration
Studies aiming to determine if transient elastography (Fibroscan), which is a form of ultrasound that measures liver stiffness, can accurately assess liver iron concentration. (ITHANET 12/03/2014)

Amlodipine for Myocardial Iron in Thalassemia
A study is designed to see if patients receiving amlodipine along with their regular chelation therapy have a slower rate of iron buildup in the heart when compared with patients who are receiving chelation only. (ITHANET 12/03/2014).

Delegation Visits
India - April 2014
Algeria - May 2014
Vietnam - May 2014

*These dates are subjects to change according to local circumstances*

Keep Us Updated!
TIF has embarked on reviewing all its members' websites!. We plan to upload your news and activities regurarly and we will project important information from your Associations' websties.

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