June 2015 | Volume 24, Issue 1
Dear Friends,

The summer has brought many thrilling moments for TIF! The past month has seen the organization by TIF of an abundance of delegation visits in many countries as well as the participation in and support of meetings and conferences in many parts of the world. Most importantly, this month has proudly brought TIF’s receipt of the “Outstanding Contribution Award” of the University of Nicosia! Coupled with the “Dr Lee Jong-wook Memorial Prize for Public Health”, granted by the World Health Organization (W.H.O.)., it reaffirms our conviction that with hard work, courage and determination our dreams are within our reach and that no challenge is big enough to deter us from reaching our goal: the provision of quality healthcare to patients all around the world. Keep reading to find out more about all these exciting news!

Editorial Team
TIF Around the World

TIF’s outstanding contribution recognized and awarded - twice!
It is with extreme pride and joy that we share with you that TIF has received two awards the same year! These awards are:

- The Dr Lee Jong-wook Memorial Prize for Public Health of the World Health Organisation (W.H.O.)

- TIF was also granted the “Outstanding Contribution Award” of the University of Nicosia!
It is our privilege to announce the receipt of another significant award:  the Outstanding Contribution Award by the University of Nicosia, Cyprus.

TIF has received theOutstanding Contribution Award, which the University of Nicosia (UNIC) grants annually to individuals or institutions for their contribution to society during the University's Graduation Ceremony held on 25 June 2015, at the Open Amphitheatre, University of Nicosia, Cyprus. Mr Panos Englezos, TIF President, and Dr Androulla Eleftheriou, TIF Executive Director have received this award on behalf of TIF.

This is not only a recognition of our own work, but also of the importance of controlling and clinically managing haemoglobinopathies - which were fatal diseases a few decades ago and did not allow children to live over 10 years of age - giving them the necessary attention and increasing their visibility in the wider community.

We are fortunate to have the encouragement and support offered by initiatives such as this. Receiving this award has deepened our commitment to continue work in this area and it has truly encouraged us in our future endeavours as a true source of motivation going forth.

TIF’s Photography Contest for the International Thalassaemia Day 2015!

We are proud to share with you that the photography contest evaluation has been completed and the winning entries have been selected!

The selection process of theparticipants that have entered the photography competition entitled "Enhancing partnership towards patient-centered health systems: good health adds life to years!" organised by TIF has been completed! The aim of the contest was to raise awareness about Thalassaemia and its subject was based on this year’s theme for the 22nd International Thalassaemia Day.

We have received a total of over 300 photographs, and we would like to thank all of our contestants for their participation. We were delighted to receive such optimistic and inspiring photographs!

Winners of TIF’s International Photography Contest:
First Prize of 500$: Mr Dipayan Bhar

Second Prize of 300$: Mr Pushkar Vyas

Third Prize of 100$: Mr Victor Hugo Casillas Romo








We would like to express our wholehearted congratulations to all the winners! Keep an eye on our social media to keep updated on future photography contests!

A delegation visit to Tirana, Albania has been materialised by TIF, represented by Mr Loris Brunetta, TIF Board Member and Dr Michael Angastiniotis, TIF Medical Advisor, between the 25 and 26 of June 2015.

The main objective of the delegation visit was to assess the current state of patients' cardiological monitoring.  The visit also sought toassess the practical issues concerning the use of MRI, and to asses further the state of multidisciplinary care, and to enquire after the current services on prevention.

During the visit TIF met with the official focal points for thalassaemia at the Ministry of Health of Albania, the medical staff of the Mother Teresa hospital, representatives of Albanian  Thalassaemics Association (ATA), representatives of Albanian Association of Thalassaemia and other Haemoglobinopathies and the industry .

The TIF team responded by offering suggestions to improve the effectiveness of patient care and of prevention in Albania.

TIF Publications

Out Now!

  • The Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT), 3rd edition  has been released on the NLM Bookshelf’s public site. Please click here to view it. The book’s contents are accessible by search query

  • Translations of Publications
      • Standards for the Clinical Care of Sickle Cell Disease in Adults (2008) in Greek
    • A Guide for the Haemoglobinopathy Nurse (2013) in Greek
      • Emergency Management of Thalassaemia (2012) in Greek
  • Coming Soon!
    Translations of Publications
  • About thalassaemia Cartoon (2010) in Bahasa Indonesian
  • Sickle Cell Disease (2008) in Arabic
  • Emergency Management of Thalassaemia (2012) in French, Arabic, Turkish
  • A Guide for the Haemoglobinopathy Nurse (2013) in Burmese and in Farsi
  • Guidelines for the Clinical Management of Transfusion Dependent Thalassaemia (3rd ed.) (2014), Chinese, French, Arabic, Turkish, Greek.
  • Guidelines for the Clinical Management of Non Transfusion Dependent Thalassaemia, French, Arabic, Turkish, and Greek.
  • Translations of Videos
    • All about Thalassaemia Cartoon Animation (2013) is being translated into Bahasa Indonesian, Malaysian, Chinese, Hindi, Urdu, and Turkish
      • Papers for publication

        • A paper has been submitted for publication named “Thalassaemia Reviews"
      • Another paper about TIF and its role has been prepared by the TIF office to be published in commonly read journals in every region of the world
International News

The Hamza Foundation Welfare Thalassaemia Hospital and Blood Transfusion Services in Peshawar, Pakistan organized a Blood donation Awareness Event for the occasion of the World Blood Donor Day on 14 June 2015 in Peshawar, Pakistan.

The theme of the World Blood Donor Day2015 was “Thank you very much for saving my life”. The main objective of the event was to celebrate the day, to encourage volunteers to donate blood, and to create awareness about blood donation. The guest of honour at this event was the Chairman of the Pushtu Department, at the University of Peshawar, Prof Abaseen Yousafzay, who is well-known throughout Pakistan.

The event was covered by the national media whose role is vital in creating awareness about volunteer blood donation.

After this event, an awareness walk at the Peshawar Press Club was held, which was attendant by doctors, journalists, students, social workers, politicians and patients/parents with thalassaemia.

The Emirates Thalassaemia Society has organized a celebratory eventfor the winners, the participants, and the supporters of the social media competition entitled ‘What is Thalassemia?’ The event took place on 23 April 2015 in Dubai. This event was held under the patronage of the wife of His Highness Sheikh Dr Sultan Bin Khalifa Bin Zayed Al Nahyan, Advisor to the Head of State, Sheikh Sheikha Bint Saif Al Nahyan, Chairperson of Emirates Thalassemia Society and in the gracious presence of Her Highness Sheikha Shamma Bint Sultan Bin Khalifa Al Nahyan.

This competition has provided an efficient platform to achieve the Association's goal towards creating a UAE society free of new thalassaemia cases and by inviting young minds in universities, schools, and colleges to create the best social media page through instagram, Twitter or Facebook.

The 2014 – 2015 contest exceeded all expectations and creativity barriers. This year, the Emirates Thalassaemia Society took the competition to a new, innovative level in order to continue its thalassaemia awareness campaign targeting all segments of the UAE community.

The highly anticipated Awarding Ceremony witnessed the presence of more than 500 guests from the participating schools and universities including school principals, deans of universities and supervisors. Her Highness Sheikha Shamma Bint Sultan Bin Khalifa Al Nahyan awarded the winners and the participants of the competition. 

The Development Association for the Support of Patients with Blood Disorders (Association De Développement Pour L'aide Aux Malades Du Sang - ADAMS) in Morocco organized an event for the International Thalassaemia Day on 23 May 2015.

The aim of this event was to raise awareness for thalassaemia and other haemoglobinopathies.

The event was a great success having seen the participation of doctors and other relevant stakeholders.

We are overjoyed to inform you that the European Patients’ Academy organised a Workshop entitled “Patient Education Taking Off In Your Country”, on 22 April 2015, in Dublin.

Nearly 190 representatives from patient organisations, industry, academia and regulatory authorities came to this event. The aim of this workshop was to learn about how to move forward with the implementation of EUPATI at the national level in each of the 12 participating countries and beyond.

Please visit the Conference’s website where you will also find the photo gallery, videos, presentations and last but not least the virtual snapshots from some of the most inspired participants.  Just click here to see more about the EUPATI Dublin workshop.

In Portugal, the International Thalassaemia Day was celebrated with the organization of many events by the Associação Portuguesa de Pais e Doentes com Hemoglobinopatias in collaboration with other Patient Organizations and health professionals of the Alentejo region, in the south of Portugal.

Among the events that took place, a blood donation camp was organized in the city of Beja. The Association also held a series of workshops at schools of that region to inform the students about haemoglobinopathies since it is one of the most prevalent in thalassaemia carriers in the country. Some sessions on health services have also been incorporated in the programme.

The educational activities were an immense success and have managed to spread awareness about thalassaemia accross the region.

The International Thalassemia Day was observed on 8 May 2015 by the Federation for Indian Thalassemics at the Sri Sathya Sai International Centre, in New Delhi, India. This year was special as it was organised ‘by the thalassemics for the thalassemics’.

The programme of the event included Bollywood dance performances by the Shamak Davar’s institute of Dance, book presentations by Jyoti Arora (from Delhi)  and Chandan Das (from  Orissa), and song and music performances.

The guest of honour at this event was Mrs Maneka Sanjay Gandhi, the Minister for Women and Child Development. She assured all possible support to thalassemic patients. The event was also attended by doctors, nurses, social workers and a number of representatives from the blood banks.

The Federation of Indian Thalassemics offered gifts to all participants. The event was attended by more than 500 people and was covered by the local media. 

We are delighted to inform you that the 1st Hunan Thalassemia Congress, held by the New Sunshine Foundation on 9 May 2015 in the Changsha city, in the capital city of Hunan province, was  a great success!

The Beijing New Sunshine Charity Foundation and its branch in Hunan province (hereafter called “New Sunshine”) hosted the first Hunan Thalassemia Congress to celebrate the International thalassemia Day on 8 May 2015.

The event was co-hosted by the Hunan Thalassemia Patients' and Parents' Volunteer Team, the Hunan Women’s Federation, the Hunan Children’s Hospital, and the China Democracy Alliance.

The Deputy Mayor of Changsha City and the Chief of China Democracy Alliance at Changsha, also attended this meeting.

Approximately 400 participants, including thalassemia patients and their families from the South of China, medical professionals in this field, government officials, the Secretary General of the Hunan TV Charity Fund, and academics, attended this meeting which was immensfully succesful.

Delegation Visits


It is with great pleasure that we share with you that TIF, represented by Dr Androulla Eleftheriou, TIF Executive Director, Mr George Constantinou, TIF Assistant Secretary, and Ms Lily Cannon, TIF Operations Manager, attended the 20th Congress of the European Hematology Association (EHA), in Vienna which took place between 11-14 June 2015. This year is a special one for EHA as an innovated congress program was introduced.

The EHA Annual Congress provided a forum for presenting original unpublished data and sharing ideas for hematological innovation as well as disseminating evidence-based knowledge of primary clinical relevance.
Mr George Constantinou, on behalf of TIF, participated in the programme of the conference through his presentation on how a Patient Organizations should work. To view TIF’s presentation during the 20th EHA Congress, as given by Mr George Constantinou, TIF Assistant Secretary, please click here. We congratulate and applaud Mr Constantinou for his excellent presentation.

TIF also marked its presence through the presence of a dedicated exhibition booth, focused on the distribution of TIF’s Educational Material.

Additionally, read the interview of Dr Androulla Eleftheriou, TIF Executive Director, as a Patient Advocate, in the European Hematology Association's (EHA's) Twenty-Five Year Celebration Booklet entitled Fresh Blood (on pages 93-96) ! Click here.

TIF in collaboration with Algerian stakeholders, Prof Dimitris Loukopoulos, TIF's Medical Maghreb Coordinator, and the Algerian Haematology Association, has organised a press conference and a celebratory meeting/workshop on May 2015, in Algeria which took place in the context of the International Thalassaemia Day.

The celebratory meeting/workshop fell within TIF’s plans to perpetuate awareness and to further sensitize the community as well as local health authorities about thalassaemia in Algeria.

Local health authorities and the medical community had also attended the celebratory meeting/workshop.

Following TIF’s previous activities in the country, TIF, represented by Dr Michael Angastiniotis (TIF Medical Advisor) and Dr Matheos Demetriades (TIF Country Officer), will realize a delegation visit to Beijing, China. This visit will take place in China between 4-7 July 2015, in order to discuss further joint actions with involved stakeholders.

In the context of this meeting, the TIF delegates will meet with National Health Authorities including those from the National Health and Family Planning Commission, representatives of Angel’s Mom Charity Foundation and the New Sunshine Foundation, and the Chinese Organization of Rare Diseases.

More details will follow in our upcoming Newsletter.

We are overjoyed to see that the Facebook page created for our new app, ThaliMe, has reached over 300 likes! Share our ThaliMe page! We have some exciting news coming very soon!

2nd Pan-Asian Conference on Haemoglobinopathies Vietnam, September 2015
We look forward to the 2nd Pan-Asian Conference on Haemoglobinopathies  with immense enthusiasm, which, as announced, will be held between 26 – 27 September 2015, in Vietnam! We expect to see you all there!

We are delighted to inform you that the online registration is now open! The Early Bird Registration ends on 31 July 2015 and the Conference Registration ends on 12 September 2015.

More information is available on our website at https://www.tifevents.org/

TIF’s MSc in Inherited Haemoglobin Disorders: Thalassaemia and Sickle Cell Syndromes (Blended)
TIF is delighted to announce that the work for establishing its MSc course in Inherited Haemoglobin Disorders - Thalassaemia and Sickle Cell Syndromes (Blended mode) in collaboration with the University of Nicosia, Cyprus is gradually advancing and is in the process of being finalised.

We hope that with the support of the international faculty members of the course we will be ready launch it by this upcoming September!

More details about this programme here

On the occasion of commemorating the International Thalassemia Day on 8, May 2015, the Thalassemia Association of Argentina in collaboration with the Network of Transfusion Medicine GCABA co-organised a Campaign to encourage voluntary blood donation.

The event was also supported by the National Blood Plan Department of the Ministry of Health of the country.

Blood donation awareness brochures were distributed during the event underlining the importance of donating blood and informing the community about thalassemia. The campaign was a great success, with more than 90 blood donors who came to give their blood.

Cooley’s Anemia Foundation (CAF) has organised its 2015Patient/Family Conference!  For 2015, this anticipated annual event was held between 26-28 June at the Wyndham Hamilton Park Hotel and Conference Center in Florham Park, NJ. 

Entitled “Celebrating Self-Empowerment,” the 2015 Conference was a unique opportunity for U.S. individuals with thalssemia and their family members (parents, siblings, spouses, etc.)  to meet other members of the community and learn important information that can have a positive impact on their health and their lives. 

The Conference Agenda can be downloaded here.  

The Myanmar Thalassaemia Association held an event at the Yangon Children Hospital in Myanmar.  Over 103 thalassaaemia patients (children and adults) attended the meeting with their family members.

Workshops for patients were given by haematologists, and representatives of the National Blood Center. Additionally, thalassaemia patients were provided free bone mineral density measurement, free HBs Antigen testing, and free Hepatitis B vaccination.

TIF's cartoon booklets “All about thalassaemia” (Myanmar translation) were distributed to all patients and parents. Hand-made toys were also offered as gifts to children present a t the event.

The Blood Patients Protection Council (BPPC) in India has organized an event to honour the World Sickle Cell Day and the  World Blood Donor day. The event took place on 14 June 2015 at the Regional Science Center and Planetarium, in Calicut.

The programme included blood donations, distribution of cash awards to blood disorder patients, workshops for sickle cell patients, poster contests, the distribution of educational kits and many more fun activities. During the event, a request was made to the state and central Government of India to set up a Hematology Center at the Medical College hospital in Calicut.

The poster making contest for the World Blood Donor Day focused on the subject of this year's World Blood Donor Day theme "Thank You for Saving my Life”. Shamal A.C, Navya C, and Geethika E, won the first, second and third prizes respectively in the contest.

9th Annual Sickle Cell and Thalassaemia Advanced Conference

Date: 7– 9 October 2015
Time: 09.00 – 17.00
Venue: The Hilton Tower Bridge, 5 More London Place, Tooley Street, London, SE1 2BY

Now in it's ninth year, this global conference is aimed at those with a common interest in sickle cell disease (SCD) and thalassaemia, including specialist registrars, consultant haematologists, paediatricians and clinical nurse specialists.

It is designed to update professionals working with patients with SCD and thalassaemia to consider the most efficient and safe way to manage such vulnerable patients.

Participants from around the world will gain insight on a range of areas, including new therapies, managing acute and chronic complications, iron chelation therapy, managing the transition from paediatric to adulthood, and how to close the gap between the management of SCD in developing  and developed countries.

The European network for Health Technology (EUnetHTA) organised a symposium entitled Cross-Border Healthcare in Europe: Promoting Equal Access to Quality Care, in Brussels, on 1 July 2015.

This international symposium provided a platform for a constructive debate on the current state of the Cross-Border Healthcare Directive’s implementation throughout Europe as well as on the necessary actions that need to be taken to reduce health inequalities and facilitate access to better and safer care for patients in the EU.

Delegates had the opportunity to exchange innovative ideas, engage in thought-provoking topical discussion and analyse best practice linked to cooperation between border regions in Europe and national healthcare systems. Public Policy Exchange welcomes the participation of all key partners, responsible authorities and stakeholders.

Patients want to access cross-border health services when treatment is not available in their home country, when it is better managed elsewhere, or, as is the case in many border areas,  when the nearest available care is in another Member State. Currently, cross-border healthcare accounts for approximately 1% of the overall EU public health spending – around €10 billion per year.

Research & Therapeutic News

Pfizer begins late-stage trial of rivipansel
A Phase III trial has begun enrollment to assess Pfizer's rivipansel in sickle-cell disease patients who are hospitalized with vaso-occlusive crisis. The trial will include about 350 participants who are being treated with intravenous opioid therapy ( AABB 23/06/2015).
Read more.

AABB urges CMS to cover HSCT for sickle cell disease treatment; NHLBI to host forum on SCD
AABB submitted comments to the Centers for Medicare and Medicaid Services asking the agency to add sickle cell disease treatment to the national coverage determination for hematopoietic stem cell transplantation. AABB based its comments on the severity of the disease, the clinical evidence for the efficacy of allogeneic HSCT as a treatment for SCD and the current lack of clarity over whether or not the treatment is covered by Medicare. A decision is expected in late October (AABB 23/06/2015).
Reead more.

Researchers study changes related to aging of red blood cells
Scientists in Singapore used micropipette aspiration and chemical exposure to study the effects of aging on single red blood cells. The study team found that the malaria parasite was unable to infect erythrocytes whose cytoskeletons had been compressed and cell membranes stiffened. The findings were reported in the journal Scientific Reports (AABB 15/06/2015).
Read more.

White Paper: Licensing Your Cord Blood, A Guide to Getting FDA Approval for Marketing your Public Bank’s Lifesaving Product as a Prescription Drug

Hematopoietic progenitor cell, cord blood is being utilized to treat a number of medical conditions, with tremendous hope for many more groundbreaking treatments to come. Most cord blood units (CBU) available for therapeutic use today are categorized as investigational new drugs (IND). However, a handful of public cord blood banks are pursuing or have received FDA licensure. This allows cord blood to be sold as a prescription drug—known as HPC, Cord Blood—on the consumer market. HPC, Cord Blood is sold the same way any prescription drug is sold (AABB 02/06/2015).
Read more.

Researchers identify biomarker for hepatitis B progression, replication
A study in the journal Digestive Diseases and Sciences found that elevated serum levels of microRNA-181b are associated with hepatitis B viral replication and disease progression. Researchers measured levels of the microRNA in 64 patients with hepatitis B and 72 people without the virus (AABB 1/6/2015).
Read more.

Study evaluates monotherapy for hepatitis B patients
Maintenance therapy with tenofovir disoproxil fumarate was associated with continued virological suppression among most chronic hepatitis B patients previously treated with a combination of tenofovir disoproxil fumarate and entecavir, according to a study in the European Journal of Gastroenterology & Hepatology. In the 57-patient study, TDF monotherapy was associated with a viral breakthrough rate of 44% in the year following combination treatment, compared with 88% in the entecavir group and 26% in the continued combination treatment group (AABB 01/6/2015)
Read more.

Bristol-Myers Squibb ceases antiviral discovery program
Bristol-Myers Squibb has decided to cancel a program that identifies new antiviral drug candidates, including its work on hepatitis B and HIV. The company said products that have reached market and candidates that have reached clinical development, such as the HIV attachment inhibitor BMS-663068 and hepatitis C drug daclatasvir, will not be affected (AABB 25/6/2015)
Read more.

Blood test that can tell you every virus you’ve ever had
Curious how many viruses have invaded your body over the course of your life? Now you can know. Researchers have developed a DNA-based blood test that can determine a person's viral history, a development they hope could lead to early detection of conditions, such as hepatitis C, and eventually help explain what triggers certain autoimmune diseases and cancers.
The new test, known as VirScan, works by screening the blood for antibodies against any of the 206 species of viruses known to infect humans, according to a study published Thursday in the journal Science (AABB 07/06/2015).
Read more.

Gene Therapy for Transfusion Dependent
Beta-thalassemia (TIGET-BTHAL)

This phase I/II trial clinical trial will investigate safety and efficacy of the GLOBE lentiviral vector, which encodes the human β-globin under control of native promoter and control elements. Preclinical studies by the G. Ferrari group (TIGET, Ospedale San Raffale) have given extremely encouraging results for the GLOBE vector in mouse models of β-thalassaemia and in human patient-derived cells. The study is open to patients aged 3 to 64 years with transfusion-dependent β-thalassaemia and is expected to enrol ten patients over a time period of two years. The detailed study description provides extensive inclusion and exclusion criteria for potential participants in this study (ITHANET 17/06/2015).
Read more.

An updated list of rare disease registries in Europe
Orphanet has recently published an updated document of "Rare disease registries in Europe". The report gathers the information collected by Orphanet so far, regarding systematic collections of data for a specific disease or a group of diseases. The report includes data about EU countries and surrounding countries participating to the Orphanet consortium. The diseases covered by each register are provided with Orpha number which is their identifier in the Orphanet nomenclature (ITHANET 15/06/2015).
Read More.

Access to new medicines in Europe: technical review of policy initiatives and opportunities for collaboration and research

A WHO report, entitled "Access to new medicines in Europe: technical review of policy initiatives, opportunities for collaboration and research", illustrates the challenges faced by the national health systems in the WHO European Region where only a handful of countries are able to appraise the cost–effectiveness of new drugs. The report makes a special mention of orphan drugs as well as the cross border initiatives benefiting rare disease patients (ITHANET 15/06/2015).
Read More.

Merck seeks FDA approval for hepatitis C combination treatment
A new drug application was submitted to the FDA by Merck for its experimental grazoprevir and elbasvir combination as a treatment for chronic hepatitis C. The company also plans to file applications in Europe and with other regulators this year (AABB 28/05/2015).
Read more

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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