June 2014 | Volume 14, Issue 1
Dear Friends,
It feels like summer has finally arrived and TIF has many exciting activities to share with you. We are half way through the year already and it has been an eventful semester for TIF! Many upcoming events are also planned for this month and, indeed, for this summer. We invite you to explore this month's newsletter and we hope you enjoy it!
Editorial Team
TIF Around the World

We are thrilled to announce that TIF has participated in the Patient Advocacy Session of the 19th Annual Congress of the European Haematology Association (EHA) held on 12 - 15 June 2014 in Milan, Italy. This session was dedicated to patient organizations who work together to advocate issues of common interest in the field of haematological diseases. TIF represents of course the non-malignant part of haematology.

TIF with the presence of a dedicated exhibition booth, focused on the distribution of TIF’s Educational Material. An important highlight of this Congress was also the announcement of the launching of the new Guidelines for the Clinical Management of Transfusion Dependent Thalassaemias.

This year's congress program was tailored to meet the needs of the large variety of specialties and interest fields and has been compiled by the Scientific Program Committee and the Advisory Board under the leadership of Pieter Sonneveld (Erasmus Medical Center, Rotterdam, the Netherlands). All the ingredients were present in the program, and the amazing city of Milan making this congress another exceptional experience.

A very significant high level meeting entitled “ Economic Crisis and Healthcare - ensuring access to public health services: the case of hepatitis B and C ” took place from Tuesday, 03 June 2014 to Wednesday, 04 June 2014 in Athens, which was attended by TIF. The Meeting was co-organized with the Hepatitis B and C Public Policy Association and was hosted by the Hellenic Centre for Disease Control and Prevention (KEELPNO), and has given a particular focus on the barriers to the provision of health services, particularly in countries where austerity programmes are in place.

EU Member States have been invited to speak of their varying national experiences aiming to identify means of increasing access to health services. The case of chronic hepatitis B and hepatitis C has served as a very apt example: the prevalence of these diseases is high, especially in the European South with very serious lasting effects, although the means to prevent and treat exist.

The Thalassemia Patients’ Friends Society (TPFS) in Palestine and the National Committee for Thalassaemia Prevention, with the collaboration of the Thalassaemia International Federation (TIF) in Cyprus and the Palestinian Ministry of Health (MoH), have organized the 5th National Palestinian Thalassemia Conference under the theme “Thalassaemia…New Challenges”. This Conference has been held under the patronage of his Excellency the Palestinian Minister of Health, in Ramallah-Palestine,on 07-08 May 2014.

TIF has participated in this conference, represented by Mr Riyad ElBard, TIF Board Member, and Dr Michael Angastiniotis, TIF medical advisor. The 5th National Conference has addressed a series of important matters which included healthcare in Palestine, the role of national institutions when it comes to no new cases of thalassaemia, the psychological and social issues of patients with thalassaemia in Palestine, and patients’ rights.

This conference has greatly contributed to achieving the objective of enhancing the knowledge of local medical and health authorities and gave them the opportunity to meet and network with involved stakeholders in the field. It was well-attended (around 400 participants) with wide representation from governmental services, NGO’s, and other stakeholders.

With the aim of promoting the self-management of patients with Thalassaemia, the Pancyprian Thalassaemia Association incollaboration with TIF and the Cyprus Institute of Neurology and Genetics (CING) organized an Interactive Workshop on Thalassaemia on 11 May 2014, at CING, Nicosia, Cyprus. This workshop was placed under the auspices of the Cyprus Ministry of Health.

This initiative aimed to enhance the patients' existing knowledge around the topic of treatment protocols. Dr Androulla Eleftheriou, TIF Executive Director and Dr Michael Angastiniotis, TIF medical advisor were among the speakers of this workshop. Among the topics discussed at this workshop were the monitoring and clinical management of thalassaemia, safety and adequacy of blood, and the contribution of patients in the promotion and creation of social support policies.

TIF Publications

Coming Soon!

  • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemias (2014)


Important News!

  • TIF has established a new collaboration with the European Society of Emergency Medicine (EuSEM) in endorsing the book "Emergency Management of thalassaemia" and in distributing it to its members.
  • Translated Books - Coming Soon!
    • “A Guide for the Haemoglobinopathy Nurse (2013) in Greek and Farsi.
    • Emergency Management of Thalassaemia (2012) - Porter J, Taher A, Mufarij A, Gavalas M in Greek
  • About thalassaemia Cartoon in Bahasa Indonesian
    • Standards for the Clinical Care of Sickle Cell Disease of in adults (2008) Greek
TIF Contributions and Publications in Journals
  • We are delighted to announce that the publication that TIF has contributed to - Treatment Strategies, Blood & Marrow Transplantation of the Cambridge Research Centre has now been published! Click on the following link to read more!
    • Read the Middle East Health Journal : Advances in Imaging (January-February 2014) for an interview with TIF executive director, Androulla Eleftheriou and Professor of Medicine, Hematology & Oncology and Associate Chair of the American University of Beirut Medical Center in Lebanon, Prof Ali Taher regarding the under-diagnosis and under-treatment of non transfusion dependant thalassaemias. You can find this article entitled "Under diagnosed, under treated, under estimated" in pages 80-86
    • The the Scientific World Journal: Updates in Hemoglobinopathies, Volume 2013 (2013), has included an article by TIF, entitled "The impact of Migrations on the Health Services for Rare Diseases in Europe: The Example of Haemoglobin Disorders. You can find this article, pages 40-50, by clicking here
International News

It is with great joy that we announce to you that a Bone Marrow Stem Cell Transplantation Centre (BMT)  has been established in Sri Lanka for Thalassaemia patients. BMT has been delayed in Sri Lanka due to the non-availability of HLA molecular testing and the cost of the procedure. 

The Asiri Surgical hospital, one of the largest private hospitals in Sri Lanka has signed a Memorandum-of-Understanding with the Cure2Children Foundation, a world-renowned international NGO dealing with thalassaemia worldwide, to undertake the treatment of six thalassaemic children with BMT, free-of-charge, in exchange for training the staff of the Asiri Surgical hospital on this procedure.

14 June is World Blood Donation Day! The focus of this year's World Blood Donor Day campaign is "Safe blood for saving mothers". Every day, about 800 women die from pregnancy or childbirth-related complications. Severe bleeding during delivery and after childbirth is a major cause of mortality, morbidity and long-term disability.

The goal of the campaign is to increase awareness about why timely access to safe blood and blood products is essential for all countries as part of a comprehensive approach to prevent maternal deaths. To watch the video which forms a part of WHO's awareness campaign, click here:

The World Sickle Cell Disease Day is honoured each year on 19 June! This annual event commemorates the date in 2008 when the General Assembly of the United Nations adopted a resolution recognizing sickle cell disease (SCD) as a public health concern. World Sickle Cell Awareness Day provides an opportunity to increase understanding of SCD and how the disease affects individuals and families worldwide.

Sickle Cell Disease is a serious condition that affects people around the world. Due to the severity of health complications associated with SCD there is a need for increased knowledge and awareness about the disease.

The Hamza Foundation Welfare Hospital And Blood Transfusion Services (HFWHBTS) in Peshawar- Khyber Pakhtunkhwa -Pakistan organized a one day blood donation camp at Sarhad University Peshawar, and a Press Walk Conference at Peshawar Press club to mark the World Blood Donor Day on 14 June, 2014 which was held under the theme of " Safe Blood for saving Mothers".

A seminar about blood donation also took place at the Peshawar Press Club where patients, parents, doctors, students of different Universities, academics, social workers, and blood donors were present. The main motive of this event was to honour the World Blood Donor Day, to encourage volunteer blood donors, and to create awareness about blood donation. Many prizes and awards were also distributed to volunteer blood donors by Mr. Ijaz Ali Khan, Founder/Chairman of the Organization.

The Chief Minister of Khyber Pakhtunkhwa -Pakistan, Mr. Pervaiz Khattak, was also present at this event, applauding student blood donors of Colleges and Universities, and awarding them extra marks for donating blood during the academic year, thus encouraging other students to also donate blood. He also requested that the general public donates blood at least once a year.

On the occasion of the World Blood Donor Day, a bicycle Marathon was co-organized by Novartis Hellas, in collaboration with the Thalassemia Associations in Athens, Thessaloniki, Volos, Heraklion and Ioannina with the aim of creating awareness on Thalassemia and Voluntary Blood Donation on 15 June, 2014.

The bicycle marathons were open to the public in 5 cities of Greece. This marathon was held under the slogan "The ride is better with friends" and aimed to raise awareness about the disease and to inform citizens about the benefits of donating blood.

The bicycle rides were held in the following 5 cities:

- In Athens, at 11:00,
- In Thessaloniki, at 19:00
- In Heraklion at 11:00
- In Ioannina, at 11:30
- In Volos, at 19:00

"It is our priority to ensure that we defend the rights of all members of our Association and to improve their quality of life," said the President of the Pan-Hellenic Association of Patients with Thalassemia, Joanna Myrilla. "However, the each day for us remains a struggle".

Anti-Pain Rally Organized World Sickle Day 2014 in India
The Blood Patients’ Protection Council (BPPC), in Kerala, India, organized an Anti-Pain Rally on 21 June 2014 as a the part of the World Sickle Cell Day activities. Many patients with Sickle cell disease and thalassemia as well as their families participated in this rally.

This event was created with the aim of promoting awareness relating to safe blood, treatment for blood disorder patients, and the development of life saving drugs. Dr Kareem Karassery, Gen. Convener of BPPC, inaugurated the rally while Dr M.Muhammed Ershad, chairman of the Organizing Committee presided over the function. Awareness material related to the prevention of Sickle cell disease was also distributed to all the participants.

Articles from Bulletins of the World Health Organization

No universal health coverage without strong local health systems

Primary health care remains as relevant today as it was in 1978 (Alma Ata), 1987 (Harare) and 2008 (Ouagadougou).4,5 African countries must update their local health systems to rise to today’s and tomorrow’s health challenges. The Community of Practice “Health Service Delivery” is poised to play a key role in helping them to achieve this in the years to come.
Read the whole article from the World Health Organ Bulletin (2014; 92:78–78A) here

Placing populations’ health at the heart of the post-2015 agenda

The threat of sexual violence undermines the safety and security of women and adolescent girls. In conflict situations, women and girls are often raped and used as instruments for gaining political or military advantage. Endemic diseases and social dislocation are especially detrimental to children and pose major threats to security.
The post-2015 sustainable development framework, with its focus on four overarching areas, offers an opportunity to build on the Millennium Development Goals (MDGs). A transformative agenda that prioritizes the most disadvantaged people everywhere, and especially women, children and adolescents, will yield the greatest benefits. Such an agenda will require a strong collaborative international effort involving multiple stakeholders. Existing partnerships, such as Every Woman Every Child and the Partnership for Maternal, Newborn & Child Health, provide a model that has worked in the past and that should be extended across the many sectors involved in global health and sustainable development.

Read the whole article from the Bulletin of the World Health Organization 2013;91:467-467A here

Huge unmet need for palliative care

According to research from WHO in collaboration with the Worldwide Palliative Care Alliance, most palliative care is provided in high-income countries but almost 80% of the global need for palliative care is in low- and middle-income countries.
While about one third of the people who need palliative care have some form of cancer, most of them have other illnesses such as cardiovascular diseases, chronic respiratory diseases, AIDS, diabetes and other chronic and life threatening illnesses.
WHO promotes the integration of palliative care across diseases and all levels of care, with emphasis on community/home-based care. According to the report, only 20 countries (8%) have fully integrated palliative care into their health-care systems.
Last month, WHO’s Executive Board considered a report calling for more attention to be given to palliative care particularly in low- and middle-income countries.

Read the whole article from the Bulletin of the World Health Organization (2014;92:80-81) here

Making fair choices on the path to universal health coverage

Universal health coverage is at the centre of current efforts to strengthen health systems and to improve the level and distribution of health services. It is high on the global and national agendas of many countries, many of which have already made significant progress. The compelling case for universal health coverage derives principally from the values of fairness and equity, and these values are also critical on the path to that goal. If universal coverage cannot be attained immediately, making progress fairly and equitably should be the main concern. Motivated by this insight, the World Health Organization (WHO) in 2012 set up a Consultative Group on Equity and Universal Health Coverage.

The group addressed fundamental normative issues and difficult trade-offs in an unconventional way. The findings and recommendations of the consultative group are highly relevant to everyone involved in pursuing universal health coverage. The guidance offered should be particularly helpful to governments. In addition, the analysis should stimulate further debate and reflection in the global health community about the choices and trade-offs that appear on the path to universal health coverage.

Read the whole article from the Bulletin of the World Health Organization (2014;92:389)

We are pleased to share with you that the TIF Board of Directors' Meeting has been effectuated with great success! Board Members attended this Meeting, which was held at the Hilton Hotel in London Kesinghton in UK, on 31 of May - 1 of June 2014.

During this meeting a number of key topics were presented and discussed, including aligning joint efforts, and identifying and planning future action.

The THALAMOSS Project is another ambitious project in which TIF is invloved in. This project is co-funded by the European Union’s Seventh Framework Program for Research, Technological Development and Demonstration. THALAMOSS (THALAssaemia MOdular Stratification System for personalized therapy of beta-thalassaemia) is aimed at the development of universal sets of markers and techniques for the stratification of β-thalassaemia patients into treatment subgroups.

In this context, TIF participated in the 3rd THALAMOSS General Assembly Meeting which has been organized on 25–27 June 2014 in Nicosia, Cyprus, inaugurating the discussion. The aim of the meeting was to discuss clinical complications in sickle cell disease and β-thalassaemia, update on the collection of patient data, as well as to monitor the progress of the THALAMOSS project and planning.

The THALAMOSS tools and technologies are anticipated to facilitate identification of novel diagnostic tests, drugs and treatments specific to patient subgroups and guide conventional and novel therapeutical approaches for β-thalassaemia, including personalised medical treatments.

Exciting News! It's our pleasure to share with you the toolkit for Non-Transfusion Dependent Thalassaemias (NTDT) Voices , a project which was launched during the 13th International Conference on Thalassaemia and the Haemoglobinopathies, through which TIF aims to inform, educate and raise awareness about non-transfusion dependent thalassaemias, the clinical significance of which has been under-recognised by the medical/research and health policy-making communities alike.

We truly hope that the range of tools that have been designed to meet your needs, will inspire, move, educate and raise awareness about NTDTs under the motto "Together, Stand Up For Them ! Visit our website for more information at http://www.thalassaemia.org.cy/news-archive.shtml

The European Reference Networks Conference, held in Brussels, on 23 June, was marked by TIF's dynamic presence and active participation. DG SANCO has organised this conference on European Reference Network in Brussels which brought together highly specialised healthcare providers, experts, national authorities, decision–makers, and independent bodies with experience in the assessment and evaluation of healthcare providers.

The aim of the conference was to discuss the state of play on the organisation of highly specialised networks and their members across the EU and to look into the next steps of the deployment process, in preparation for the forthcoming call for European Reference Networks in 2015.

Establishing European Reference Networks of highly specialised healthcare providers represents a clear added value for the EU and will help to provide affordable, high-quality and cost-effective healthcare to patients with conditions requiring a particular concentration of resources or expertise, and to improve these patients' access to the best possible expertise and care available in the EU for their condition.

Parallel and in alignment with TIF’s efforts to strengthen collaboration with important stakeholders in Morocco, Mr Lorris Brunetta, distinguished TIF Board Member, completed a trip to Morocco from 9-13 May.

In the context of this visit, Mr Brunetta participated in the Thalassaemia Day Scientific Workshop held on 9 May 2014, organised by the Service of Haematology and Paediatric Oncology in collaboration with the Faculty of Medicine and Pharmaceutics of the Casablanca University, which took place at Rabat in Casablanca. Many important physicians, haematologists and paediatricians attended this event. Among the topics discussed at this meeting were the diagnostics of Haemoglobinopathies, their monitoring, the causes and consequences of iron overload, clinical case studies, and the establishment Haemoglobinopathies reference centres in Morocco.

Mr Brunetta also met with important stakeholders, such as members of the Moroccan Rotary Club and the Moroccan Association for Thalassaemia and Sickle Cell Disease, and attended the festivities

The National Health Operations Centre (EKEPY) of the Hellenic Ministry of Health has organised for the first time an EU High Level Expert Meeting in Athens which was held under the auspices of the Greek EU Presidency and the Hellenic Ministry of Health. TIF, represented by Ms Lily Cannon, European Affairs Officer, has attended the Health Emergency Management Session in the EU Meeting which focused on the role of National Health Operations Centres, and which took place , on 09-10 May 2014 in Athens.

The purpose of this meeting was not only to discuss but to proceed further to a fruitful exchange of scientific data, experiences and followed practices in the field of emergency management in the Health Sector among experts at an EU level.

For further details, please visit the EKEPY’s website at http://ekepyeu-

TIF video sharing platform for patients

TIF has already launched its new exciting platform which aims to initiate a two way interaction between TIF and patients on a global Youtube platform, allowing patients to submit their own videos on a revamped TIF YouTube page and to provide them with an incentive for uploading videos through a contest which will build up to World Thalassaemia Day with the publication of the winning videos. We look forward to receiving your videos! To submit a video, please click here.

We would like to applaud the outstanding achievements of some of the most prominent figures in the field of medicine, and more specifically in the field of haematology which were awarded for their contribution in research, their trailblazing scientific and clinical studies, and their exceptional scientific accomplishments:

2013 Wallace H. Coulter Award for Lifetime Achievement in Hematology
The American Society of Hematology (ASH) presented the Society's highest honor, the 2013 Wallace H. Coulter Award for Lifetime Achievement in Hematology, to Professor Sir David Weatherall , MD, of the University of Oxford for his more than 50-year career in hematology combining seminal discoveries, visionary translational research leadership, and a passion for global health initiatives that have together helped improve clinical care for thousands throughout the developing world. 2013 ASH President Janis L. Abkowitz, MD, of the University of Washington has presented Sir David with his award on Sunday, December 8, during the 55th ASH Annual Meeting and Exposition in New Orleans. A true pioneer in the field, Sir David has paved the way for other physicians and scientists in refining the understanding of inherited blood disorders, particularly thalassemias and tropical diseases.

National award honors CHOP scientist for career work in gene therapy for hemophilia
Katherine A. High , M.D., of The Children's Hospital of Philadelphia (CHOP) was honored for her trailblazing scientific and clinical research in the bleeding disorder hemophilia when she received the 2013 E. Donnall Thomas Prize from the American Society of Hematology (ASH) at its annual meeting on 9 Dec 2013 in New Orleans. An internationally recognized expert in the molecular basis of hemophilia, Dr. High has developed novel approaches to correcting hemophilia with gene therapy in studies over the past two decades.

H. Ham - Louis R. Wasserman Lecture Award to Dr Clara Camaschella
ASH president Dr Janis L. Abkowitz presented the Thomas H. Ham - Louis R. Wasserman Lecture Award to Dr Clara Camaschella, of the Università Vita-Salute San Raffaele in Italy in recognition of major contributions related to the understanding of iron homeostasis and its clinical importance.

Cooley's Anaemia Foundations's annual event, the 2014 Patient-Family Conference, has been held on 20-22 June in Rosemont, Il. Entitled "Perspectives & Strategies for Thalassemia Care & Curative Options," the Conference provided a unique

opportunity for any individual with thalssaemia and their family members (parents, siblings, spouses, etc.) to meet with other members of the community and learn important information which will have a positive impact on their health and their lives.

On the occasion of the International Thalassaemia Day, the Vietnamese Thalassaemia Association (ViTA) and National Institute of Haematology and Blood Transfusion (NIHBT) held many activities for patients/parents.

A meeting with over 300 patients/parents was organised which has received great attention from the media.

At this meeting, there were psychology, prenatal diagnostic, and endocrine consulting services to tend to the needs of thalassaemia patients who were present at this meeting.

Parallel to this meeting, a recreational activity was held for children with thalassaemia where cartoons were displayed to entertain them.

The Greek Thalassaemia and Sickle Cell Association in Larissa organized an Informative Meeting on Sickle Cell Disease on 31 May, on the occasion of this year’s World Sickle Cell Day, on the 19 June. The meeting was held in the hotel Larissa Imperial, in Larissa, a city located in central Greece.

The audience consisted of 120 patients with sickle cell disease the majority of which are being treated in the Thalassaemia and Sickle Cell Department of the General Hospital of Larissa.  Moreover, doctors, nurses and patients from the Thalassaemia Units of the neighboring cities of Volos, Trikala and Karditsa also attended the meeting.

Among the subjects covered with great success were Sickle Cell disease manifestations, the pathophysiology of the disease, ways in which patients can protect themselves from the outburst of a crisis and, of course, the very important subject of therapeutic alternatives. The meeting had an interactive nature and the audience had the opportunity to pose questions on issues of greatest interest to the attendees.

The Association for Voluntary Blood Donation and Friends of Thalassaemia Patients “Pigi Zoes” and the Association of Parents of Children with Thalassemia have organized an event on Thursday, 8 May 2014 to honour the International Thalassaemia Day at the pedestrian path between St Sophia Street and Tsimiskes Street from 10:00 to 18:00.

A booth was set up where members of the Association “Pigi Zois” and patients with thalassaemia distributed informational material together with students of the "Ioannideio" Primary School in Thessaloniki with the aim of promoting voluntary blood donation and registering new donors.

The association currently has 6,300 donors who voluntarily give blood and offer ten minutes from their time to help people suffering from Thalassemia.


Research & Therapeutic News

Two beta-thalassemia patients who received bluebird bio's gene therapy LentiGlobin in a trial showed evidence of β-globin production very soon after the treatment according to preliminary study results presented at a meeting of the European Hematology Association in Italy. Five more patients could be enrolled in the trial, and a 15-patient study is being planned, according to bluebird bio. (AABB 14/6/2014)

In an abstract submitted to the 2014 EHA Conference, a prospective study evaluating the efficacy and safety of Deferasirox - Deferoxamine combination, over 24 months in 60 patients concluded that there is continued iron overload. Initial combination therapy was followed by Deferasirox monotherapy. (Ayidinok, Capellini, Kattamis 12-15/06/2014)

The Centers for Disease Control and Prevention has revised recommendations on preventing infection with Middle East respiratory syndrome coronavirus. The new document addresses the time frame for adherence to precautionary measures, care for infected clinicians, hand hygiene and considerations for people visiting MERS-infected patients. (AABB 3/6/2014)

U.S. researchers looked at genomes of more than 600 pneumococcal strains collected from children with and without sickle cell disease and found bacterial adaptation in sickle cell patients. The findings, published in the journal Cell Host & Microbe, may explain why vaccines against pneumococcal infections do not protect young sickle cell disease patients as well as those without the condition. (AABB 05/27/2014)

The 3rd THALAMOSS General Assembly Meeting has been held on June 25-27 in Nicosia, Cyprus. THALAMOSS, which stands for THALAssaemia MOdular Stratification System, is a research project funded from the 7th Framework Programme of Research & Development of the European Union. The project brings together 13 leading European and US Research Institutions, as well as European and Israeli SMEs. The ITHANET Portal is one of the partners of the THALAMOSS project. (THALAMOSS 25/06/2014)

FDA grants priority review status to AbbVie's oral hepatitis C therapy AbbVie has obtained priority review designation from the FDA for its experimental all-oral regimen against chronic genotype 1 hepatitis C infection. The regimen consists of protease inhibitor ABT-450 and antiviral ritonavir combined with an NS5A inhibitor called ombitasvir and the polymerase inhibitor dasabuvir with and without ribavirin. (AABB 14/6/2014)

Study finds potential therapeutic target for sickle cell disease. A study in the Journal of Clinical Investigation revealed that controlling the levels of sphingosine-1-phosphate, a bioactive lipid that regulates multicellular functions, reduced sickling of red blood cells in mice with sickle cell disease and could serve as a potential therapeutic target in humans. Metabolomic screening data showed that levels of S1P in mice and humans are higher, which cause disease progression. Additionally, the team found that higher sphingosine kinase 1 levels in the blood also mean higher S1P and that PF-543, a new SphK1 inhibitor, reduces sickling and other symptoms. (AABB 19/05/2014)

Delegation Visits
See our next issue for delegation visits that are to take place


Keep Us Updated!
TIF encourages all its members to update their websites! We plan to upload your news and activities regularly and we will project important information from your Associations' websites.

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