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February is a short month but filled with fascinating activities for TIF! Although it seems to have flown by fast, it was a really great time to prepare for the upcoming months. Please follow us as we highlight all the activities that took place during this month.
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TIF's activities around the world
TIF in China
We are pleased to share with you that a delegation visit was conducted by TIF in China between the 13th and the 15th of December 2015. The objectives of this delegation visit were for TIF to participate in a conference organised by the Thalassaemia Chinese Federation (TCF), to sign a strategic cooperation agreement with TCF and to decide on a plan of activities for the next three years. The TIF delegation was comprised of Dr Androulla Eleftheriou, TIF Executive Director, and Dr Michael Angastiniotis, TIF Medical Advisor.
The one day conference has seen the participation of a great number of health professionals but also patients, families and members of volunteer groups. Within the context of the conference programme, two presentations were delivered by TIF: (i) on thalassaemia care (by Dr Michael Angastiniotis) and (ii) on the global situation (by Dr Androulla Eleftheriou).
During the afternoon sessions apart from talks by Prof Wang Zhenyao, and Dr Androulla Eleftheriou (on the global picture), the sessions were taken up by awards to the various volunteers and new members of the newly founded Thalassaemia Chinese Federation.
The highlight of the following day was the official signing of the Strategic Cooperation Agreement between TCF, and TIF. Negotiations followed for upgrading 5 treatment centres in South China to EU standard reference centres. The process will start with a tour of thalassaemia specialists to 4 of these centres, in order to discuss with and update local experts on what is needed to achieve this important goal.
Kingdom of Saudi Arabia (KSA)
An official delegation visit by TIF to Jeddah was realized on the 7th of November 2015. This visit offered the opportunity to discuss the possibility of initiating joint new projects and programmes for the coming years.
In addition, this delegation visit also presented a great opportunity for TIF to strengthen its network of key experts in the country, as well as to investigate ways to support patient and parent associations in their quest to build their capacities and skills.
A workshop organized by TIF in collaboration with the Saudi Thalassaemia Friends’ Society, entitled Moving Forward in Saudi Arabia: Status of health care services and beyond in Jeddah on the 7th of November 2015, was held under the auspices of the King Abdulaziz University and the King Fahd Medical Research Centre.
Participants extensively discussed the need to establish thalassaemia reference centres and the development of nationwide multi-disciplinary care. Stemming from this delegation visit was the development of a consensus document that was forwarded to the national health authorities.
A possible follow-up visit in 2016 would consolidate the outcome of the 2015 delegation visit, and may include the organisation of a large educational event for patients/parents.
Pakistan
We are delighted to inform you that TIF was invited to participate in the faculty of speakers at the 10th National Thalassaemia Conference, organised by the Thalassaemia Federation of Pakistan, in Karachi, between the 27th and the 29th of November 2015.
This visit offered the opportunity to TIF to participate in the above-mentioned conference, but more importantly to strengthen collaboration between TIF and Pakistan’s national associations, and to meet with the Provincial Ministers of Health and other officials of the Sindh and Punjab Provinces.
The Karachi workshop had a very positive impact, updating medical specialists and parents/ patients on latest advances in the prevention and management of thalassaemia, while working to sensitise policymakers to the importance of developing a comprehensive provincial/ national strategy to address haemoglobinopathies in Pakistan.
 
Iran
Iran’s programme for the prevention and treatment of haemoglobinopathies is a model for the region. The provision of optimum care for all, however, will require greater accessibility to treatment, as well as the harmonisation of care to ensure a multidisciplinary approach across the entire country.
Following TIF’s delegation visit to the Islamic Republic of Iran between the 16th and the 18th of September 2015, TIF has acquired a clearer picture of the situation in situ and has been better able to focus its assistance and support to national efforts to instigate further improvements to existing services, including the establishment of reference centres, and satellite treating centres in the district.
Romania
A TIF delegation visit to the capital, Bucharest, in the upcoming months aims to promote TIF’s activities and goals in Romania, and to find out the latest developments and policies regarding health care services for rare and chronic disorders. TIF reiterates its aim to further support national efforts to address the control of thalassaemia, and to identify solutions to improve thalassaemia patients’ quality of life and access to quality healthcare.
The aims of the delegation visit are to promote its activities and achieve its goals in Romania and to learn about any new developments / policies in the field of health and especially regarding promoting health care services for the rare disorders and chronic disorder patients. In addition, TIF aims to further support national efforts in addressing the issue of control of thalassaemia, highlight gaps and identify solutions to improve the quality of life and access to quality healthcare of thalassaemia patients.
TIF is also currently in the process of identifying experts or doctors in order to translate the 3rd edition of the Guidelines for the Clinical Management of Transfusion Dependant Thalassaemia in Romanian.
Greece
We are thrilled to share with you that TIF attended a grandiose celebratory event, revering the 40th Anniversary of the Greek Thalassaemia Federation, since its establishment, which took place on 28 November, in Thessaloniki, Greece. The event was attended by over 300 participants from across the country. This celebratory event was an opportunity to officially recognize and award pioneering parents, parents, friends and other supporters whose work immensely contributed in strengthening the voice of patients and their families and in securing their rights for quality care at very difficult and challenging times.
Mr Panos Englezos, TIF President, who was amongst the awardees, received a special honorary award during this event for his invaluable contribution in the field of thalassaemia. Dr Androulla Eleftheriou, TIF Executive Directors was also invited to this event as a keynote presenter, who delivered a presentation on the ‘Global Thalassaemia Demographic data’.
 
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Available for download: TIF’s Digital Library App!
TIF has undertaken a project revolving around the development of a mobile application for iOS and Android devices. The application consists of a digital bookshelf for a selection of TIF’s publications.
The final reviewing process is completed and we are pleased to share with you that TIF has proceeded in launching the app on the IOS and Android markets.
Please find below the links for iOS and Android apps:
Apple store for IOS
Google Play for Android
Living with thalassaemia: The Video Challenge competition continues for a second year!
Join the 2016 Video Challenge competition and let your imagination flow!
TIF is holding its special “Living with Thalassemia Video Challenge” for a second consecutive year, asking members of the thalassaemia community to share videos relating to thalassaemia that will spread a positive, hopeful, or inspiring message.
The TIF video-sharing platform, designed with a primary focus on connecting thalassaemia patients around the world, constitutes one of TIF’s most powerful projects. The aim is to motivate patients, providing them with an incentive to upload videos in a contest that will culminate with the publication of the winning videos during May, the month of the International Thalassaemia Day!
Participants are asked to upload a 2-5 minute video about their experiences living with thalassaemia. Participants can unleash their creative spirit with short films, fiction stories or animation videos about thalassaemia. The possibilities are endless!
By sharing stories, patients and their families will help to create a virtual community where they can connect and gain support from others.
The deadline for the contest is on the 6th of May 2016, with the selection procedure taking place in early May. More information will be available soon on social media and TIF’s website. So stay tuned—the winning entries will be selected, announced, and shared on social media and in the next Board Member Update.
To view entries to last year’s competition, please visit: http://goo.gl/1Lh4Mh
New and upgraded TIF website!
TIF, in the context of increasing its visibility, has upgraded and updated its website to effectively showcase its work, dedication and mission-driven causes and to reach out to an even greater audience, thus, spreading awareness and further educating the scientific community and the community of patients/parents about thalassaemia. This undertaking has already been finilized and our new website has already been launched! Visit our page at www.thalassaemia.org.cy. We look forward to receiving your comments!
Expanding our Social Media!
We are excited to share with you that we have undertaken the significant expansion of TIF’s social media to better help TIF connect with audiences beyond Facebook and Twitter and to strengthen its online presence and visibility. Social media now one of the most popular aspects of internet usage. Therefore, we believe that this move will help TIF use its global reach to expand its horizons.
We are thrilled to share with you that we have set up our new Instagram account with the help of Mrs Maria Hadjidemetriou, who will also be in charge of this page. Mrs Hadjidemetriou’s collaboration has been invaluable for increasing TIF’s visibility through our social media. Find us on instagram at @tif_thalassaemia. We will keep you posted for any updates.
Issue 67 of TIF’s Magazine is out!
We are thrilled to share with you that the latest issue of TIF’s Magazine is out and available for download on the following link: http://www.thalassaemia.org.cy/communication/tif-magazine/issue-67
This issue of TIF’s Magazine brings a new design and format and updated content better tailored to the needs of our readers. Please follow us as we highlight all the activities that took place during the months of May until December.
The e-ENERCA project progressing!
At this stage of the project, the registry prepared by TIF and its partners is now ready for piloting in two centres.
Preliminary data on epidemiology and other outcomes of the registry has been presented at the European School of Haematology (ESH)-ENERCA training course on diagnosis and management of rare anaemias, which was held in Lisbon, Portugal between the 29th and the 30th of January 2016.
Apart from the obvious benefits of identifying rare anaemia patients and where they are located, in support of rational policy planning for service development, the registry will also help to keep track of increases in cases due to migration currently occurring in Europe from the Middle East and Africa, which are increasing the numbers of haemoglobinopathies in European regions with historically low prevalence of such disorders, as well as other rare anaemias from countries with traditional consanguineous marriage customs. Policy adjustments may be required in European countries to accommodate the needs of congenital and chronic diseases that require specialised services.
TIF’s Renzo Galanello Fellowship
TIF is delighted to announce that the work for establishing its fellowship program, the TIF – Renzo Galanello Fellowship, launched in 2013, in the context of its internationally recognised educational programme, is gradually advancing and is in the process of being finalised.
In our effort however to collaborate with other reference centres as well and widely spread this fellowship, developed in collaboration with and offered through the Whittington Hospital NHS Trust in London under the supervision of Dr Farrukh Shah, Consultant Hematologist, the training will now be offered through UCLH under the supervision of Professor John Porter, Professor of Hematology and Dr Perla Eleftheriou, Consultant Hematologist.
The training period has commenced in November 2015 and will be completed end of January. The three candidates chosen for this course come from Pakistan, the Maldives, and Nigeria. These are countries where haemoglobin disorders are mostly prevalent and where the knowledge is limited.
European Reference Networks (ERN)
TIF, as the umbrella federation of thalassaemia in Europe and worldwide, undertook the initiative to begin a line of communications with all relevant stakeholders throughout Europe regarding the formation of a rare haematological diseases ERN (HD-ERN).
We have worked in three main directions, namely:
i. Disseminating knowledge and information to our member base in Europe, highlighting the value of ERNs and the importance of advocating to their national health authorities for the national designation of their haemoglobinopathy centres;
ii. Sensitizing healthcare professionals (HCPs) working in haemoglobinopathy expert centres across Europe about the importance of applying and receiving national designation from the national health authorities as well as the future implications that being part of an ERN will provide for them and their Centre (e.g. EU funds for research);
iii. Working in the context of a common plan of action to enlighten both HCPs and national health authorities about ERNs in collaboration with the other haematological patient associations that are members (together with TIF) of the European Hematology Association (EHA) Patient Advocacy Group. This is a group of 10 haematological patient organisations working at the national, regional and international level representing patients with malignant and non-malignant haematological disorders, collectively forming the Patient Advocacy Group of the European Hematology Association (EHA) – the regional professional body for haematologists, providing the patient perspective to EHA's advocacy and educational programme.
By joining forces with the European Hematology Association (EHA) we are confident that we will reach the grass-root national levels of haematologists urging them to lobby their governments for national designation of their centres.
Additional to the aforementioned actions, TIF has also participated in five calls with the EHA Patient Advocacy Group, in the last four EHA also participated.
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We are delighted to present you the 2016 theme for the 8th of May activities which is:
‘Access to Safe & Effective Drugs in Thalassaemia’.
 This year’s theme highlights the need to support policy decisions that safeguard health and reduce inequalities in the health field. TIF’s mission is to ensure equal access to quality health care for all patients, so that they receive appropriate treatment and drugs, free of charge or reimbursed by the government, and in concurrence with the guidelines and standards of international experts.
You are kindly requested to send us your plans of action for the 8th of May 2016 through completing the following form or alternatively by sending them to us at thalassaemia-lp@thalassaemia.org.cy.
We have also devoted a weebly blog for our members to share their plans for the 8th of May. We invite you to share your ideas for the day.
International Photography Contest 2016
Thalassaemia International Federation (TIF) is organising a Photography competition for the year 2016, with the aim of creating awareness about thalassaemia, in the context of the International Thalassemia Day, celebrated each year on May 8.
Participation in this contest is open for all ages, and all countries across the world
Deadline
The deadline for the competition is Tuesday, 30 April 2016.
Subject
The subject of this photography contest is based on this year’s theme for the International Thalassaemia Day
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
Submissions
Submissions should be sent to thalassaemia-lp@thalassaemia.org.cy with the name and surname of the participant as well as the title of the photography contest title in the subject of the email.
For further clarifications, please contact Thalassaemia International Federation (TIF) at thalassaemia-lp@thalassaemia.org.cy or 00357 22 319 129
Click here for the Terms and Conditions of this contest.
Click here for the FAQ section.
Anthem translated and sung in English for this year's International Thalassaemia Day!
As some of you may already know, an anthem for thalassaemia has been created in Greek by Mr. George Theofanous, a world renowned composer, musician, and lyricist. The music for this anthem was composed by him and the lyrics were written by Mr. Stavros Stavrou. This composition was sung by the children of his Musical Workshop and it was presented for the first time during TIF’s formal Musical Evening and Gala Dinner, entitled Precious Rubies, held at the Presidential Palace on 6 May 2015 to honour last year’s International Thalassaemia Day.
We are delighted to share with you that this anthem has now been translated and sung in English! You can listen to it by clicking the following link:
We invite you to translate them into your language, so that we can spread the joyous and hopeful message conveyed by the anthem to all those affected by thalassaemia for the International Thalassaemia Day 2016.
Closing, we would like to express a special thank you to Mr George Theophanous, our Musical Ambassador for his support and contribution to advocating the rights of thalassaemia patients.
Toolkit available!
Click here for the poster.
Click here for the banner.
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Publications
 OUT NOW!
- Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT), 3rd Edition (2014), English
Translations of Publications
- A Guide for the Haemoglobinopathy Nurse (2013), Greek
COMING SOON
Publications
- Shorter Version of the Guidelines for the Management of TDT (2014), English, Turkish
- Shorter Version of the Guidelines for the Management of Non Transfusion Dependent Thalassaemia (NTDT) (2013), English, Turkish
- Shorter Version of the Prevention of Thalassaemias and other Haemoglobin Disorders, Vol 1, and 2, 2nd Edition (2013), English
- Update of the Guidelines for the Management of NTDT (2013), English
Translations of Publications
- A Guide for the Haemoglobinopathy Nurse (2013),Farsi, Myanmar
- Guidelines for the Management of TDT 3rd Edition (2014),French, Turkish, Greek, Arabic, Chinese
- Sickle Cell Disease (2008), Arabic
- Guidelines for the Clinical Management of Non-Transfusion Dependent Thalassaemias(2013) in French
Translations of Videos
- All about Thalassaemia Cartoon Animation (2013) is being translated into Bahasa Indonesian, Malaysian, Chinese, Hindi, Urdu
POSITION PAPERS
- It is TIF’s policy to present its position on key issues of concern to patient groups, health authorities, professionals and society as a whole. Position papers are curently being prepared on the following topics:
▀▀ Liver disease in thalassaemia - liver disease is emerging as a major cause of morbidity and mortality in thalassaemia patients. TIF therefore maintains that its prevention, monitoring and case management must be a priority for thalassaemia services.
▀▀ Effective monitoring of patients - TIF is concerned that few centres follow full monitoring protocols, with the result that only a minority of patients are benefiting from early identification of and protection from potential threats to their health.
▀▀ Adherence to treatment – the need for strict adherence to chelation and other aspects of the thalassaemia treatment protocol, as per international guidelines, is a subject that must be revisited, especially in view of new therapies that may lead to a final cure, but from which patients may only benefit if they maintain good overall health The first of these position papers will be released before the upcoming months..
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International News
Planned activities in Iran
The Charity Foundation for Special Diseases (CFFSD) in Iran is planning the following activities and events in 2016:
1- Organizing an educational gathering for the International Thalassaemia Day, centered around the everyday life challenges faced by thalassaemia patients. Medical experts and professionals from different fields such as haematology, endocrinology, metabolism, cardiovascular and reproductive science as well as relevant authorities, physicians and nurses will be invited to attend this event.
2- Translation of TIF's publications into Persian, and undertaking their printing and distribution to interested local communities in Iran.
3- Supporting a research project which aims to evaluate thalassaemia patients' treatment status and identifying shortcomings.
4- Facilitating the process of implementing prenatal PND, PGD tests in order to prevent thalassaemia child births and providing financial support due to high cost of treatments.
Liver disease in Thalassemia, Athens
We are delighted to inform you about that the organisation of the 2nd "Liver disease in Thalassemia" Conference, for which TIF has provided its auspices will take place in Athens, between 3-4 June 2016.
We would like to offer our deepest congratulations for this on-going effort on behalf of our esteemed colleagues in Greece. We hope that this will become an annual event that the thalassaemia community, doctors and patients alike, can look forward to each year.
12th Annual Iron Warriors Art Contest
We hope you will participate in this annual event! The goal of this contest is to raise awareness about thalassaemia, to encourage patients to keep taking their chelation medication as directed, and to give thalassaemia patients around the world the opportunity to share their artistic expression and inspire others.
There are two categories of submissions. You may draw or paint a picture that includes one or more of the Iron Warrior® themes: hearts, butterflies, or “the Iron Warriors”. The other option (new this year) is to write a brief statement explaining what being an Iron Warrior® means to you, to serve as a motivational quote for others.
If you are submitting a statement, type your words directly into the entry form below. For artwork, you may either scan and email your submission directly to us at ironwarriorsartcontest@apopharma.com, or you may drop off the original, along with a completed entry form, at your treatment centre. The deadline for submissions is February 29, 2016. If you are bringing your submission to a treatment centre, please email at the above address before the deadline, to let the organizers know that we should expect it.
There are three separate Regional contests: the Americas, Europe and the Middle East, and Asia Pacific. For each region, there are four age categories: 5 years and under, 6–9 years, 10–13 years, and 14–18 years. In each regional age category, there will be three winners for artwork and three winners for motivational quotes.
First-place winners of the Regional contests will automatically have their submissions entered in the International contest. Here, there will be a total of 12 winners, three in each age category. The winning entries of the International contest will appear in the 2016–2017 Iron Warriors Calendar.
Be sure to follow these rules when submitting your entry:
• All artwork and motivational quotes must be original.
• Artwork must be created on white paper, in landscape (horizontal) orientation. You may use crayons, markers, pencils, pastels, paint, or anything else that you like.
• Scanned artwork must have a minimum resolution of 300 dpi.
• You must fill in the information on the next page, and your parent or guardian must complete and sign the waiver form.
• The deadline for emailing your entry or dropping it off at a treatment centre is February 29, 2016 (International Rare Diseases Day).
More things to know about the contest:
• Regional contest winners will be announced on March 15, 2016, and International contest winners will be announced on April 1, 2016.
• Calendars that contain the winning International entries will be available for download on May 8, 2016, International Thalassaemia Day.
• Submissions (whether original or printed from a scanned copy) may be put on display at future thalassaemia events.
• Original artwork will not be returned.
Good luck and have fun! And don’t forget the Iron Warriors® pledge: I pledge to do my best to remove iron and to encourage other children with
thalassaemia to work hard and stick with their chelation plan.
Rare Disease Day
29 February 2016 marks the ninth international Rare Disease Day, coordinated by EURORDIS, aiming to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan Join us in making the voice of rare diseases heard. The theme of this year's World Rare Disease Day "the voice of the patient" highlights that patients must express their needs for the change that will improve their lives, the lives of their families, as well as those who take care of them.
More information: Rare Disease Day 2016 (EURORDIS 29/02/2016)
EHA – Publication of ‘Road Map for Haematology Research: A Consensus Document
In the February 2016 issue of Haematologica, critical research of blood and blood-forming organs in Europe is given a boost. The European Hematology Association Roadmap for European Hematology Research: A Consensus Document summarizes the current status of basic, translational and clinical hematology research and identifies areas of unmet scientific and medical need in Europe. It provides guidance for European and national policy makers, funding agencies, charities, research institutes and researchers when they make decisions on initiating or funding research and developing research programs.
“For the first time, hematologists in Europe came together to develop a roadmap to guide hematology research in Europe” says Professor Andreas Engert, chair of the EHA Research Roadmap Task Force, “Hematology in Europe has achieved a lot, but the discipline must focus and collaborate to be efficient and remain successful in improving patient outcomes. The Roadmap does just that and will determine the research agenda in Europe in the coming years.”
Under the leadership of Andreas Engert, his Task Force and eleven section editors, some three hundred experts from over twenty countries in Europe, including clinicians, basic researchers and patients, were involved in drafting the Research Roadmap. Stakeholders such as national hematology societies, patient organizations, haematology trial groups and other European organizations (e.g. in overlapping disease areas) were consulted to comment on the final draft version. “This means that the subtitle ‘A consensus document’ is particularly appropriate: the document reflects the views of the hematological research community in Europe. This is crucial,” says Professor Tony Green, president of EHA, “if we want to convince policy makers to support the realization of this important research.”
“Now’s the time for Europe to pay attention,” states Professor Ulrich Jäger, chair of the EHA European Affairs Committee. He goes on: “With an aging population, the slow recovery from the financial and Euro crises, costly medical breakthroughs and innovations – quite a few of which involve hematology researchers, Europe faces increased health expenditures while budgets are limited. Policy makers are rightfully cautious when spending the taxpayers’ money. So it is our responsibility to provide the policy makers with the information and evidence they need to decide where their support impacts knowledge and health most efficiently, to the benefit of patients and society. The Research Roadmap delivers on that. Now it is up to the policy makers in the EU to deliver too.”
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Medical Corner (from TIF’s medical sources)
AbbVie's hepatitis C drug obtains EMA panel backing
AbbVie gained a positive opinion from the European Medicines Agency's Committee for Medicinal Products for Human Use for the combination of Viekirax, or ombitasvir, paritaprevir and ritonavir, and Exviera, or dasabuvir, without ribavirin for the treatment of chronic hepatitis C patients with genotype 1b and compensated cirrhosis. The opinion was backed by Phase IIIb trial data showing a 100% sustained virologic response rate 12 weeks following treatment.
More Information: Specialty Pharmacy Times (AABB 30/2/2016)
Sickle cell disease among children in Africa
An article published in International Journal of Africa Nursing Sciences provides an integrative review of 63 references related sickle cell disease among children in Africa, focussing on the incidence, prevalence, morbidity, and mortality; current practices and challenges related to screening, diagnosis, and treatment. From this data the authors also provide recommendations for practice, policy, and research to improve health outcomes of children with sickle cell disease in Africa. (AABB 27/2/2016)
Zika virus test receives FDA approval for emergency use
A CDC-developed Zika virus diagnostic test -- the Zika immunoglobulin M antibody capture enzyme-linked immunosorbent assay -- has been authorized for emergency use by the FDA. The test can be used on samples of blood and cerebrospinal fluid.
More Information: Regulatory Focus (AABB 27/2/2016)
Developer of hepatitis B treatment gets $3M funding boost
A round of seed funding has secured $3 million for San Diego-based startup Chromis Therapeutics. Proceeds will be used for the clinical advancement of its investigative hepatitis B antiviral technology, which focuses on inhibiting covalently closed circular DNA.
More Information: MedCityNews.com (AABB 27/2/2016)
Trial of Merganser's beta thalassemia drug candidate begins
A clinical trial is underway to evaluate Merganser Biotech's M012, which is being developed as a treatment candidate for conditions such as beta thalassemia and some subtypes of myelodysplasia.
More Information: American City Business Journals/Philadelphia (AABB 26/2/2016)
Hepatitis B drug from Gilead accepted for EMA review
A marketing authorization application filed by Gilead Sciences for its chronic hepatitis B drug tenofovir alafenamide fumarate has been accepted for review by the European Medicines Agency. The firm filed for US approval last month.
More Information: Seeking Alpha (free registration) (AABB 26/2/2016)
Patients enrolled in Phase III trial of sickle cell disease drug
Patient recruitment has been completed for a late-stage trial of Mast Therapeutics' vepoloxamer as a treatment of vaso-occlusive crisis in patients with sickle cell disease. The primary endpoint of the 388-patient study is reduced length of vaso-occlusive crisis.
More Information: Seeking Alpha (free registration) (AABB 23/2/2016)
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