September 2014 | Volume 17, Issue 1
Dear Friends,
September is an exciting time of the year! We hope everyone's summer break was both restful and productive! We are anticipating a new start and look forward to sharing new challenges, opportunities and accomplishments with you. Happy reading!
Editorial Team
TIF Around the World

We are pleased to share with you that TIF, repre-sented by Dr Michael Angastiniotis, TIF Medical Advisor, has completed a delegation visit in the Maldives, after having received a request from the Regional Office for South-East Asia(SEARO) of the World Health Organization (WHO).

This request was made for the purpose of assisting the health authorities of the country in the updating their National Guidelines for the Clinical Management of Thalassaemia, mainly Transfusion Dependent Thalassaemia. The new 3rd edition of TIF's international Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT), will form the basis for the updating of the country's existing version of such Guidelines.

This visit also provided an excellent opportunity for TIF's representative to liaise with officials from the Ministry of Health of the Maldives, relative blood services of the country, and the patients associations.

Exciting News! TIF with the collaboration of a panel of experts has finally completed the Guidelines for Transfusion Dependent Thalassaemias. This is a major milestone for TIF’s educational programme and one that we are very proud of.

TIF’s three previous editions of the ‘Guidelines for the Clinical Management of Thalassaemia’ (1999, 2007, 2008) have been amongst the most important undertakings of TIF, which had perhaps the greatest impact in the context of its educational programme. This book is the result of the compilation of available scientific evidence, experiences, views, practices and knowledge put together for the first time. There was no such source of information prior to these guidelines andin fact the last documents produced by WHO in a short version of an information guide dates back to the 1970s and 1990s.

TIF, as a patient-centred organization that has been striving for decades to support the effective prevention and optimum patient care for patients with haemoglobinopathies across the world, wishes to thank and is greatly indebted to each and every one of the dedicated scientists and medical specialists who have offered their time and labour freely to this vast and challenging work of updating the existing Guidelines. Their knowledge and scientific judgment are now disseminated across the world and TIF will exert every possible effort to ensure that health authorities in all countries and regions of the world adopt and apply these recommendations, even in times of economic austerity, for the benefit of citizens who, despite their inherited condition, are willing and able to return the investment through their own labour and positive contribution to society, if kept healthy and with an acceptable quality of life.

Following TIF’s previous delegation visits and activities in the country, TIF is planning to realise a delegation visit to Hanoi, Vietnam, in October to meet representatives of the Ministry of Health, the Vietnamese Thalassaemia Association (ViTA), which is the National Thalassaemia Association of the country, and officials of the National Institute of Haematology and Blood Transfusion (NIHBT).

The aim of this meeting will revolve around the implementation of a National Health Programme for Thalassaemia in this country but also around the discussion on the 2nd Pan-Asian Regional Conference on Haemoglobinopathies and Rare Anaemias, which is to be organised by TIF in the upcoming year.

As a result of TIF’s endeavours in Algeria and the collaboration with its Health Authorities and stemming from several delegation visits and the signing of a Memorandum of Understanding (September 2013), the Algerian Health Authorities have demonstrated great willingness to exert every possible effort to allocate resources in moving things forward in Algeria for the materialisation of the jointly agreed road map.

In the context of these endeavours, TIF, represented by Prof Dimitris Loukopoulos, TIF Medical Maghreb coordinator, participated on 7 July 2014 in a constructive meeting which was organised by the Department of Prevention of the Ministry of Health, Population and Hospital Reform of Algeria (MSPRH).

This initiative has been a stepping stone with regards to ensuring that the aforementioned meeting will constitute a great first step not only in the materialisation of the jointly agreed road map but also in supporting efforts made to improve the quality of life of patients in the country.

We look forward to the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias with immense enthusiasm, which as announced in previous newsletters, will be held on 07-09 November 2014, in Athens!

We expect to see you all there!
We anticipate an exciting new step, as discussed in our previous board meetings in relation to the change of direction of the vision and objectives of Regional Conferences.

More information about the conference here!

Work in progress: Mobile Application programme Thal Health Web App

The countdown is underway for submitting a project proposal for the creation of TIF’s mobile application program with the aim of greatly aiding and improving the lives of people with thalassaemia.

At the moment, the platform is in the process of being tested before being officially launched in order to make the final comments and add the final details to perfect it.

The Thal Health Web App will help to connect the members of the thalassaemia community to one another and to those that care for them. The application will be designed with the active input from the thalassaemia community to ensure value, ease of use and applicability.

The envisioned program is expected to be delivered by the end of 2014 via mobile app, and will reach millions of people around the world living with thalassaemia.

TIF Publications

Out Now!

  • Community Awareness Booklets on α-Thalassaemia, β-Thalassaemia & Sickle Cell Disease (2008). (English)

  • 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


      • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemia (3rd ed.) (2014). (English)
      • Translations of Publications
        • A Guide for the Haemoglobinopathy Nurse (2013) in Greek, Farsi, and in Burmese.
        • 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
        • Sickle Cell Disease (2008) in Arabic
        • All about thalassaemia Cartoon Booklet (2010) in Bahasa Indonesian

          Translations of Videos

          • All about Thalassaemia Cartoon Animation (2013) is being translated into Bahasa Indonesian, Malaysian, Chinese, Hindi,
            and Urdu
International News

The Blood Patients Protection Council (BPPC) organized a family meeting and dinner on 13September 2014 at Jaya Auditorium, Calicut. Hundreds of Patients with thalassemia, hemophilia, sickle cell anemia and leukemia from different parts of Kerala have participated in the program.

A workshop was conducted on blood disorder diseases and a question – answer session followed for patients and parents.

During the patients’ session, various cultural activities took place. In this context a memorandum was signed between the association and national health authorities which consisted 12 points, and which was submitted to the Indian Parliament.

The European Forum for Good Clinical Practice, Diahom, and the European Medicine Agency are organising a the Better Medicines for Children Conference 2014 entitled " Explore Ways to Enhance Collaboration Between Key Players". This conference will take place on 30th September and 1st October 2014, in London, United Kingdom.

The aim of this conference is to discuss on a high level how the EU paediatric regulation is working and how it contributes to children’s health. This will include a discussion on the preparedness for the 10-year report; strategic thoughts within the EMA on how to streamline paediatric development and a session dedicated to paediatric oncology. 

As always, experts from all involved parties will be present, and on day 1, participants will discuss more specialized and hot topic issues in four breakout sessions. This will allow participants to discuss face-to-face with all stakeholders, which otherwise usually occurs by email or phone. Questions on any topic relating to the Agency’s activities can be submitted before the conference to paediatrics@efgcp.eu, and will be answered the Paediatric Medicines office at the EMA. 

The ESH-ENERCA - Training Course on Haemoglobin Disorders: Laboratory Diagnosis and Clinical Management is scheduled to take place between January 23 and January 24, 2015 in Barcelona, Spain.

The chairs for this workshop will be P. Aguilar-Martinez, M.D. Cappellini, B. Gulbis, and S.L. Thein.This Training Course on HAEMOGLOBIN DISORDERS intends to promote informal interaction and ample discussion between scientists and clinicians working in the field. Scientific presentations by international leaders will provide the current status and a perspective of these exciting developments. In separate sessions results from both basic and clinical research will be presented.

This meeting is one of the courses to be prepared in the context of the e-ENERCA project. ENERCA partners will be among the Speakers and Chairs of the event.


Delegation Visits


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.

Deadline Extended for the Video Challenge!

We would like to inform you that the deadline for the contest has been extended for the 25th of October.

Send us your video! Share your experience with us and others! Encourage other peers to tell their story whether heartbreaking or encouraging! Every story counts!

We would like to thank those of you who have participated in our video challenge. We believe many patients will benefit from your stories and your inspirational words. It is so important to spread this message to all patients of the thalassaemia community. We truly believe that your stories will serve as a stepping stone for many patients to open up and tell their own story!

To submit a video click here

TIF sets a new path with Chinese Health Authorities! As a result of joint efforts, an official delegation visit and workshop in Guilin City of Guanxi Province in China is planned for 11 October 2014. The workshop will be organised by TIF in collaboration with Chinese Health Authorities including the Division of Family Planning, the Department of Maternal and Child Health, and the National Health and Family Planning Commission of the People's Republic of China.

The aim of this workshop is to educate medical specialists on the management of thalassaemia and to sensitize local health authorities to take decisions on the control (prevention and management) of the disease. An additional aim of the workshop is to evaluate and review the current management and prevention policies in southern China.

As TIF establishes its commitment to support Iran, an official high-level follow-up visit to Iran is planned to take place within the following months of 2014.
The aim of the visit is to monitor the effective implementation of the national policies for thalassaemia that were put forward in this country in the past and review the current situation in view of the effects of the recent embargo that has been imposed on Iran by United Nations (UN) and European Union (EU) laws and which forbids Iran to export and import certain technologies that also need to be made available to patients with haemoglobinopathies.
Meetings will also be held with relevant stakeholders, including the medical community, the Ministry of Health, and Patient and Parent Associations of the country.

TIF has already proceeded, in collaboration with international and local experts to translate in Greek and publish the United Kingdom’s “Standards for the Clinical Care of Sickle Cell Disease in Adults”, the “Emergency Management of Thalassaemia”, and the “Guide for the Haemoglobinopathy Nurse”.
The official launching for these publications will be held at the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias, 07-09 November 2014, in Athens and they are expected to be published in the upcoming months. These publications are of vital importance to appropriately inform the medical and paramedical community in Greece about the timely diagnosis, monitoring, and clinical management of haemoglobin diseases, including thalassaemia and sickle cell disease.

New opportunities for collaboration with the World Health Organisation (WHO)

TIF has undertaken an ambitious initiative revolving around preparing a situation analysis for the countries of each WHO Region which aims to identify the characteristics of the population (e.g. birth, death and fertility rates), their health needs (e.g. epidemiology of haemoglobin disorders), and the public and private health-related services currently available. This analysis forms a part of a disease burden mapping and will also include the available services and future policies to be developed.

More specifically, the aims of the situation analysis are the following:
• To promote national planning for prevention and management of haemoglobinopathies and its implementation

• To establish/ strengthen surveillance systems for haemoglobinopathies

• To establish/ strengthen existing health services and create new ones

We are looking forward to embarking on this initiative in collaboration with the WHO, which formed a part of our proposed joint plan of action.

An important highlight of TIF’s activities in Cyprus will be the workshop on the Cyprus National Health Plan, which will take place at the University of Nicosia, on 4 October 2014. This workshop will be organised by the Cyprus Alliance for Rare Diseases (C.A.R.D.), of which TIF is a founding member, with the collaboration of the Cyprus Federation of Associations of Patients, and the participation of the Cyprus Medical Association and the Cyprus Confederation of Organisations for the Disabled. It will be placed under the auspices of the University of Nicosia and the Cyprus Broadcasting Corporation (CY.B.C.) will function as the communication sponsor for this event.

TIF is a part of the Scientific Committee of this Conference, represented by Dr Androulla Eleftheriou, TIF Executive Director, and Dr Michael Angastiniotis, TIF Medical Advisor. The TIF representatives have significantly contributed to the compilation of the workshop programme and Dr Androulla Eleftheriou will also participate in the programme and coordinate this event.

The main objectives of this workshop will focus on familiarizing patients with rare and chronic disorders such as thalassaemia about the National Health Plan, but also on examining its provisions as regards to rare diseases including haemoglobinopathies. The outcome of the interactive discussion will be materialised in a manifesto which will be compiled and sent to all involved stakeholders, including the Ministry of Health of Cyprus

We are happy to share with you that our latest issue of the TIF Magazine, issue 65, is underway and will be distributed to more than 56 countries in the beginning of November! The magazine will be uploaded soon on our social media and our website before the print version reaches you.

The Greek Thalassaemia and Sickle Cell Association in Larissa is organizing a seminar on Sunday 5th October. A special focus will be given to the latest developments on the treatment in hepatic C, the oral therapy.

Through a series of meetings, phone calls, and “listening sessions,” the Cooley’s Anemia Foundation (CAF) has been working diligently for months to assure that the Health Resources and Services Administration (HRSA), which is an agency of the U.S. Department of Health and Human Services, fully understands and appreciates the complications that are involved in the treatment of thalassemia.

The result of these efforts involves a planned Funding Opportunity Announcement (FOA) by HRSA that will support the provision of services to a number of thalassemia treatment centers.

We would like to inform you that as part of the ongoing WHO reforms, and organizational priorities on Universal Health Coverage, a new department ‘Service Delivery and Safety (SDS)’ has been created headed by Dr Edward Kelly, Director, SDS, within the cluster of Health Systems and Innovation.  There are three units under this new department, namely Traditional and Complementary Medicine (TCM), Services Organization and Clinical Interventions (SCI), and Patient Safety and Quality Improvement (PSQ).

Effective from 16 June 2014, the area of work of Blood and Transfusion Safety is now within the SCI Unit, under Dr Hernan Montenegro as Coordinator, SCI, and Neelam Dhingra has moved to PSQ unit as Coordinator, PSQ.  Mr Jun Ping Yu is the Technical Lead in the area of Blood and Transfusion Safety.

It has been indeed a very enriching and fulfilling experience working with Dr Neelam Dhingra during the last several years. We take this opportunity to thank her for all her support and contribution to WHO in this area of work and hope for her continued support in the coming years within the new organizational structure. 


Research & Therapeutic News

Study is to examine working memory and school readiness in young children with sickle cell disease in comparison to demographically matched control children without sickle cell disease (ITHANET 29/09/2014).
Read more

We are delighted to announce the publication of an article describing the IthaGenes database and the companion IthaMaps tool in the open-access journal PLoS ONE. IthaGenes is an interactive archive of all sequence variations affecting haemoglobin disorders, including the globin loci and disease modifiers and polymorphisms with relevance for clinical diagnosis (ITHANET 22/09/2014).
Read more

Experts issue framework for managing sickle cell disease :A National Heart, Lung, and Blood Institute panel has released updated recommendations for managing sickle cell disease in children and adults. The guidelines, published in the New England Journal of Medicine, advise daily oral penicillin until age 5, vaccination against pneumonia as early as age 6 weeks and annual transcranial Doppler for ages 2 to 16 (AABB 10/09/2014).
Read more

Rockland receives NIH grant to develop sickle cell point-of-care device: The National Institutes of Health's National Heart, Lung, and Blood Institute has awarded Rockland Immunochemicals a $224,473 grant to develop an antibody-based point-of-care device to diagnose sickle cell disease in infants and young children.
(AABB 08/09/2014)
Read more

Scientists develop rapid, low-cost test for sickle cell disease: Harvard University researchers have designed a faster and less-expensive test for detecting sickle cell disease that can produce results within 12 minutes and identify the disease even before acute symptoms develop (02/09/2014).
Read more

Protein may restore T cells in patients with hepatitis, study suggests
The transaction factor T-bet may restore dysfunctional CD8-positive T cells in patients with hepatitis B and C, researchers reported in the Journal of Experimental Medicine. "T-bet has predictive value during acute HCV infection and could be of use for monitoring the success of antiviral therapy as well," researcher Dr. Peter Kurktschiev said (18/09/2014).
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Inovio-GeneOne's Ebola vaccine to enter human trial next year
Inovio Pharmaceuticals and partner GeneOne Life Science plan to assess their experimental Ebola vaccine in human clinical trials in the first half of next year. Data from animal trials showed that the vaccine can fight the virus and protect against weight loss. Reuters (AABB 24/09/2014)
Read more

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