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This monthly e-Newsletter provides information on some of TIF's many activities. Read through TIF's activities which are blossoming as this month marks the preparations for the International Thalassaemia Day.
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TIF's activities around the world
TIF's Delegation visit to Pakistan
Thalassemia constitutes a major challenge to the national healthcare system of Pakistan with its consequent medico-socio-economic repercussions, not belittling the pain and suffering to the patients and their families.
To focus on the needs of this country, TIF realized a delegation visit between the 5th and the 6th of April 2016 in Islamabad, Pakistan.
The aim of this delegation visit was to discuss with regional stakeholders prevention and patient care matters which are of great importance for the region. The discussion also revolved around the need to promote the quality control of centres, reduce out of pocket expenses, and form private public partnerships between Thalassaemia NGOs and National Health Authorities for benefit of patients with thalassaemia.
Dr Michael Angastiniotis also met with the Director General of the Bait-Ul-Mal Foundation to discuss ways through which Thalassaemia programmes may be supported. The foundation has been very active in supporting the treatment of 7000 thalassaemia patients and has established its own model Thalassaemia centre.
This delegation visit was constructive and its outcomes are anticipated to be fruitful both for the country and the region. TIF expressed its commitment to support patients with thalassaemia in the country and across the region.
Promoting TIF's activities in India
Having successfully completed the capacity building activities in India and the preparation of the charter of demands of the State Task Force groups to the health authorities of 8 states (Delhi, Maharashtra, Gujarat, Punjab, Haryana, Madhya Pradesh, Utter Pradesh, Chandigarh), TIF is now keeping the momentum going by appointing a responsible person to monitor and report all developments in the 8 states.
In addition, Dr Michael Angastiniotis will visit India between the 16th and 20th of April to meet Task Force leaders and review progress in the country. He will also take part in a series of workshops in New Delhi (16 April 2016), Kolkata (17 April 2016) and Mumbai (19 April 2016) to promote prevention, especially with regards to laboratory aspects.
2nd Thalassaemia and Haemoglobinopathies Congress in Turkey
We are thrilled to share with you that TIF was invited by the medical specialists of Turkey to attend the 2nd Thalassaemia and Haemoglobinopathies Congress in Antalya, Turkey between the 30th of March and the 2th of April 2016.
The TIF Delegate, Dr Michael Angastiniotis delivered a presentation for participants at the congress entitled “The value of Prevention in the Care of Thalassaemia”.
He also attended a meeting with the Board of the Turkish Thalassaemia Federation. Dr Angastiniotis on behalf of TIF gave the Turkish Federation an honorary plaque, as well as a donation, in recognition of the valuable work the association has accomplished in the region.
State-of-the-art symposium in Germany
We are delighted to inform you that TIF, represented by Ms Lily Cannon, TIF Operations Manager, will attend a state-of-the-art symposium on benign hematology entitled the Hämatologie Heute (German for “hematology today”), which will be held between the 21st and the 23rd of April 2016, and is organized jointly by Prof Holger Cario of Ulm University and Dr Stephan Lobitz, of the Charité Universitätsmedizin, Berlin. The symposium will be held in Scharnhorststr (Karl Storz endoscopes teaching centre).
This three-day symposium is the fifth to be organized in Germany and is definitely a story of success that helped to “resuscitate” hematology in Germany but also regionally.
Topics covered during the symposium include Thalassemia, Neutropenia, Unclear Anemia, Neonatal Hemochromatosis and Pregnancy in Sickle Cell Disease. The participants will primarily consist of clinicians who are actively treating patients with sickle cell disease and tranfusional iron overload. There will also be several patient organisations attending.
You can find the program of the conference on the following link: http://www.haematologie-heute.de/programm/.
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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
TIF’s new endeavour: Clinical Laboratory Preceptorships
The development of clinical and laboratory preceptorships (mentoring) is a new venture of TIF, which is expected to become an integral part of its educational programme for health professionals dealing with haemoglobinopathies. A series of preceptorships are planned for 2016.
This activity will be offered twice a year to 10 candidates (maximum - 5 candidates per training period) and the training period will be between 3-5 days according to the candidate’s qualifications and previous experience or the group’s (if a group from the same country is the focus/need).
A process of evaluation of the needs of the candidates before the initiation of the perceptorship as well as of all benefits, gaps, difficulties and challenges will be put in place and a report will be presented and a certificate will be provided to each candidate after completion of the perceptorship.
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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Many activities are in store for the International Thalassaemia Day, 8 May 2016
As you know, the 2016 theme for the 8th of May activities 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.
Journalist Workshop
We are delighted to share with you that TIF will organize a Workshop on May 16, 2016 at the Journalists' House in Nicosia. The workshop will be organized in the context of the International Day Thalassemia, which is honoured on May 8th, in collaboration with the Union of Cyprus Journalists, and the support of the Cyprus Alliance for Rare Diseases (CARD), and the Pancyprian Federation of Patients and Friends (POSPF
The purpose of the workshop will be to discuss and exchange ideas and experiences on the role of patients in promoting health issues to the media.
The keynote speaker at this workshop will be the world renowned journalist from BBC, Mr Matthew Hill, with which TIF has developed a close and lasting partnership. BBC is certainly and undoubtedly one of the largest news agencies worldwide with a long history of accurate and timely medical journalism.
Among the key speakers will also be Mrs Lela Kesidou, Medical Journalist / TV Presenter at the Greek channel, ERT 3 with a long and highly successful career in the field of medical journalism.
The Workshop will also attended by the Honorable Minister of Health of Cyprus, Dr. George Pamporides.
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: https://www.youtube.com/watch?v=PiobBITigQs
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
Early preparations for the 8th of May in Mauritius
We are delighted to share with you that in the context of the 8th of May preparations, the anthem for thalassemia - Precious Ruby has been translated and the joyous and hopeful message conveyed by the anthem was spread to everyone in Mauritius.
We also have the pleasure to inform you that various activities will take place during the month of May in Mauritius in the context of World Thalassemia Day. The most important ones are the following:
- Radio and TV programs aiming to create awareness about thalassemia
- A Blood Donation camp will be held on the 8th of May 2016
- Sensitization and blood drives during the second week of May in collaboration with the Association's partners and sponsors.
- Fund raising activities during the third week of May.
RDI has a new Council!
Elected at the end of March, the Council has already met once in April and will meet again in May to discuss the Strategic Approach & Action Plan for the 3 years to come.
You can meet the members of the Council personally and give your input at RDI's 2nd Annual Meeting, on May 25th, 2016 on the sidelines of the European Conference on Rare Diseases and Orphan Products (ECRD) in Edinburgh, Scotland.
If you are unable to attend, you can always communicate with the Council, ask questions and make comments on RDI's Online Discussion Group
www.rareconnect.org/rdi
Find out more about the 7 members of the Council here.
Many activities in store for the 8th of May 2016 in Pakistan!
The Fatimid Foundation in Pakistan will organize the following activities in the context of the International Thalassaemia Day, on 8th of May 2016:
- International Thalassaemia Day Seminar at a local hotel
- Drawing, painting, music, and public speaking competitions
The objectives of these activities are to create awareness about thalassaemia and the challenges that those affected face by it while at the same time to help educate nurses, doctors, medical specialists and the general public, about the latest trends in the treatment and prevention of thalassaemia.
Through the patients’ active participation in the events, the Foundation aspires to improve their knowledge and build their capacities and self-esteem.
Event held in India
The Foundation Against Thalassaemia (FAT) arranged a tour to Rajasthan, India for children with thalassaemia. This event was attended by the Rotary Club of Faridabad Central’s President, Suresh Sharma, its Secretary, Kishore Bahl and other officials.
During the tour, lectures were given to inform the participants about the prevention and management of thalassaemia. In addition, the participants were taken for sight-seeing tours in the area to visit temples, famous lakes, and artwork. Many activities took place such as sailing, singing, ad dancing.
  
This event was a great success with more than 30 participants having attended.
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Medical Corner (from TIF’s medical sources)
Prospective observational study to measure the burden of β-thalassemia in terms of health-related quality of life and health care resource utilization in patients who are receiving standard of care
Celgene Corporation, a global biopharmaceutical company focusing on discovery, development, and commercialization of products for the treatment of hematology, oncology, and immune/inflammatory diseases, has undertaken this study. The results of this study will be communicated to medical communities ,health care authorities, and payers to highlight the unmet medical needs facing patients to support access to treatments for β-thalassemia.
More information: https://clinicaltrials.gov/ct2/show/NCT02626689?term=thalassemia&rank=6.
Hepatitis B vaccine from Dynavax accepted for FDA review
Dynavax Technologies' biologics license application for its hepatitis B vaccine heplisav-B has been accepted for review by the FDA. A final decision from the agency is expected by Sept. 15.
More information at BioCentury (AABB 31/3/2016)
Report: Vaccine, medication advances key to eliminating hepatitis B, C
Advances in vaccines and medications to fight hepatitis B and C have the potential to significantly curtail the spread of the diseases in the US, according to a report from experts at the US National Academies of Sciences, Engineering and Medicine. The researchers said stopping the diseases as a public health problem means preventing disease symptoms in those who are infected and stopping disease transmission.
More information at HealthDay News (AABB 11/4/2016)
Startup to develop sickle cell disease treatment
Imara, a startup focused on the development of a treatment for sickle cell disease, has been established by orphan-drug accelerator Cydan Development. Imara has received $31 million in funding and intends to submit an application with the FDA this year for authorization to initiate Phase I trials of its SCD drug IMR-687.
More information at American City Business Journals/Boston (AABB 14/4/2016)
WHO updates treatment guidelines for hepatitis C
Due to the development of advanced direct-acting antiviral medicines and treatments for the hepatitis C virus, the World Health Organization has revised its treatment guidelines for HCV, which were originally published in 2014. The new drugs are a vast improvement over previous regimens, but price will be an obstacle to implementation of the guidelines in many nations, according to the WHO.
More information at BeckersHospitalReview.com (AABB 15/4/2016)
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