As a follow-up of last year’s high-level delegation visit to Morocco, headed by Mr Panos Englezos, TIF President and Her Highness Sheikha Sheikha Bint Seif Al-Nahyan, our esteemed Board Member, an official TIF has organised another official delegation visit  to this country between 28-30 November 2014. 

The objective of the visit was to participate in the 1st Thalassaemia Management workshop in Rabat for key stakeholders, members of the Expert Haemoglobinopathy Forum of Morocco, with a view of getting the latest updates on the latest status of the diagnosis, the prevention and clinical management of thalassaemia in the country. 

The workshop was participated by thirty nine (39) medical specialists and patients/parents representatives from across theKingdom of Morocco. TIF was represented by Dr Androulla Eleftheriou (TIF Executive Director), Mr Angelo Loris Brunetta (TIF Board member), and Dr Matheos Demetriades (TIF Senior Countries Officer)  accompanied by Dr Essam Dohair, Director of the TIF Regional Collaborating office in Abu Dhabi and met with representatives from the Ministry of Health of Morocco and the Director of the WHO Country Office.

Among the topics covered by this workshop were the  National Programme of Thalassaemia in Morocco, the actual situation and the challenges in thalassaemia management, diagnostics, transfusion, iron overload, monitoring & chelation and the establishment of Reference Center experience. Dr Androulla Eleftheriou, TIF Executive Director, gave a presentation on TIF’s engagement in Morocco & other countries.

TIF's Participation in the 5th Pan-Cyprian Conference for Thalassaemia!
TIF has attended the 5th Pan-Cyprian Conference for Thalassaemia, organised by the Thalassaemia Clinics in Cyprus in collaboration with the Cyprus Institute of Neurology and Genetics (CING), on 13 December 2014, Larnaca, Cyprus. TIF, represented by  Dr Androulla Eleftheriou, TIF Executive Director, and Dr Michael Angastiniotis, TIF Medical Advisor, actively participated with speeches and presentations.

This workshop focused on various aspects of the management of thalassaemia such as hepatitis C in thalassaemia patients, new methods for treating Hepatitis C, iron chelation and blood transfusion, and new approaches to treatment.

This workshop was very constructive as it allowed for the productive discussion of topics of great value and significance, and gave the opportunity for exchange and networking between important stakeholders in the field and the medical community of Cyprus

Fighting Viral Hepatitis in Resource-Limited Member States
Institutional and non—institutional stakeholders joined together in a discussion of paramount importance entitled “Fighting Viral Hepatitis in Resource-Limited Member States”, held on 4 December 2014 at the European Parliament in Brussels, which focused on healthcare systems and the future of patients living with viral hepatitis. TIF has participated in this event, represented by Dr Androulla Eleftheriou, TIF Executive Director.

The objectives of this event were to better understand the disease burden associated with viral hepatitis in resource—limited Member States to take stock of the current experiences and solutions to address viral hepatitis in these Member States and to call for specific policy actions to improve access and care for the benefits of patients living with viral hepatitis.

Hepatitis B (HB\/) and C (HCV) are viral infections which can create a significant burden to healthcare systems due to the high morbidity, mortality and costs of care and treatment. According to the World Health Organization (WHO), one third of the world's population has been infected with HB\/, and more than 350 million suffer from chronic infection. This situation is creating a significant pressure on healthcare systems, particularly in Member States where healthcare resources are limited.

Out Now!

Publications

• Guidelines for the Clinical Management of Transfusion Dependent Thalassaemia (3rd ed.) (2014). (English)
• • 
    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
• • A Guide for the Haemoglobinopathy Nurse (2013) in Burmese and Farsi.
• About thalassaemia Cartoon in Bahasa Indonesian
  
  
• Translations of Videos
• • All about Thalassaemia Cartoon Animation (2013) is being translated into Bahasa Indonesian, Malaysian, Chinese, Hindi,
    and Urdu
• •  
  • • 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
    •  
    • Withthe great help of Dr Duru Malyali, TIF Board Member, the Gaziantep Childrens' Hospital in Gaziantep in Turkey translated TIF's Publication' All about Thalasemia' in Turkish

We celebrated Patient Solidarity Day 2014!
The International Alliance of Patients’ Organizations (IAPO), together with more than 50 patients’ organizations and hundreds of patients from across the world, united to honour the Patient Solidarity Day on 6 December 2014 and make patient-centred healthcare a reality.

People representing dozens of diseases, countries and backgrounds, celebrated Patient Solidarity Day on 6 December 2014 and called for healthcare which is affordable, accessible and high quality for everyone. The theme this year aimed to highlight the need for universal health coverage for all.

Along with IAPO and its members, organizations including Alzheimer’s Disease International and the European Patients Forum took part and raised awareness on this Day.

Patients from around the world, from Brazil to India, Uganda to Poland, carried out a range of activities to mark the Day. These included marches, free health screenings and workshops, all to call for truly patient-centred healthcare and universal health coverage. TIF congratulates IAPO and all its members and partners in their work in raising awareness and standing in solidarity.

Blood Patients Protection Council (BPPC) organized a Rally for blood disorder patients as a part of a Global Action Programme
The Blood Patients Protection Council (BPPC) Kerala, an organization for blood disorder patients like Thalassemia, Sickle Cell Anemia, Hemophilia, and Leukemia has organized a Marathon on 25 October 2014 at S.K.Pottakkad square Calicut. Renowned writer and gynecologist, Dr.Khadeeja Mumthas inaugurated the Marathon.

After the completion of this event, BPPC organized a thorough discussion session at Shikshad Sadan, Calicut on the topic of the Plights and Rights of fatal-disease-affected patients based on Article 25 of the UN Human Rights Declaration (1948).

Dr Kareem Karassery, General Convener of the Blood Patients' Protection Council inaugurated the discussion. The Council also prepared a consensus paper which was offered to the government of India demanding that urgent steps are taken to adopt policies which respect patients’ rights and provide completely free treatment to all patients.

The Blood Patients' Protection Council has observed Patients' Solidarity Day on 6 December 2014 by organising a marathon forpatients and parents with blood disorders in front of Medical College Hospital in Calicut, Kerala, India.

The marathon was organised to honour the memory of patients who died of thalassaemia and to pay a special respect to the eminent human rights activist and former Supreme Court Chief of Justice of India, V.R. Krishnayyar who died on 5 December 2014 and who always supported the Blood Patients Protection Council’s activities.

The marathon was held under the slogan “Equal access to quality health care, patient-centred treatment and free treatment to all the patients”.

Council General Convener Kareem Karassery among others had led the marathon. After the marathon an event which was open to the public was held at the Medical College which was inaugurated by Kareem Karassery.

United Arab Emirates National Day Celebration with the UAE Thalassemia Patients!
Under the patronage of the Wife of His Highness Dr. Sheikh Sultan Bin Khalifa Bin Zayed Al Nahyan, Adviser to the Ruler of the State, H.H. Sheikha Sheikha Bint Saif Al Nahyan, Chair Person of Emirates Thalassemia Society, the Society organized a fun filled, colorful grand celebration for thalassemia patients & their families from the whole UAE on the occasion of the 43th United Arab Emirates (UAE) National Day on 23 November 2014, where they have received guests beyond their expectations.

A large number of performing artists and  famous Emirati celebrities including Badria Ahmed Goodwill Ambassador, Fatima Jasim, Emirati actress, Hessa Ryasi, famous sports and media presenter, Rafeeaa  Al Hajisi, Emirati Model and Ali Jasmi, Emirati Presenter.

The celebration included numerous colorful & musical performances by the students of the Al Aweer Primary School , the Rawda Al Baraa Kindergarten and the Dubai International School, all depicting the rich heritage & traditions of the United Arab Emirates. Other activities that kept the patients & families entertained throughout were the magic show, henna stall, arts & crafts corner, and fun games for both children & adults.  

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.

Next Phase: Video Challenge Evaluation Process!
The selection procedure of the participants that have entered the video sharing platform competition organised by TIF is still in process. The winning entries will be selected, announced, and shared soon with you, possibly in the context of our 8th of May celebrations on our social media and in the following issues of our e-newsletter!

To view the submitted videos click here.

TIF represented by Mrs Lily Cannon, EU Country Officer, has participated in a two-day Advocacy Meeting in Zurich, on 13 - 14 December 2014.
Patient representatives of national thalassaemia associations from 10 countries of the Middle East andSouth East Asian region as well as an official TIF representation, met in Zurich for a two day Advocacy Meeting.

The meeting aimed to identify perceptions about the role of patient groups in addressing the needs of patients with both transfusion dependent and non-transfusion dependent thalassaemias.

The vibrant and lively discussion demonstrated common areas of concern and highlighted the importance of patient advocacy in safeguarding fundamental patient rights. TIF, as the international thalassaemia body, remains committed to fulfilling its vision for equal access to quality healthcare for all patients with thalassaemia through the empowerment of patients & parents and the sensitisation of national and regional health authorities.

December was marked by a key meeting in which TIF participated representing the Cyprus Alliance for Rare Diseases (CARD), of which TIF is a founding member. This meeting was held at the TIF headquarters in Nicosia, Cyprus, on 19 December 2014 with the aim to discuss future action on the direction of rare diseases in Cyprus with regard to the implementation of the Cyprus National Health Plan. This meeting was attended by representatives of individual Patient Organisations for Rare Diseases across Cyprus. 

The discussion was fruitful, focusing mainly on the realignments currently taking place in Cyprus regarding the implementation of the National Health Plan. In this context, two pieces of legislation were put on the table for discussion, which have been submitted by the Cyprus Ministry of Health to the Parliament of Cyprus for ratification and concern the National Health Plan in Cyprus and the establishment of General Hospital Institutions.

On the occasion of these developments, organisations such as the Cyprus Alliance for Rare Diseases and TIF must join together to have their say and voice their concerns in order to maintain or to advance the quality of care received by patients with rare diseases such as haemoglobinopathies, as they too are amongst the family of rare diseases in Europe and globally through the EC Communication on Action in the field of Rare Diseases, 2009/C 151/02.
Concomitant to the above, CARD, TIF and other Patients’ Organisations for Rare Diseases are planning to submit a consensus document comprising their thoughts and concerns around the National Health Plan in Cyprus and rare diseases.

Special focus on TIF's MSc E-Course programme in Thalassaemia and Sickle Cell Anaemia!

TIF is currently in the process of designing the first modules for the curriculum for the MSc E-Course programme in Thalassaemia and Sickle Cell Anaemia, which is being established through the University of Nicosia and aims to offer a postgraduate academic course to health professionals in the field of Haemoglobinopathies.

TIF's MSc E-Course programme in Thalassaemia and Sickle Cell Anaemia was officially presented during the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias (07-09 November 2014, Athens). To watch the video spot, please visit the following link.

More details about this programme will be announced in future updates.

8th May 2015– Theme announced!
As announced in our previous Newsletter update, our theme for the 2015 International Thalassaemia Day is the following :

 ENHANCING PARTNERSHIP TOWARDS PATIENT-CENTRED HEALTH SYSTEMS: GOOD HEALTH ADDS LIFE TO YEARS!

This year’s theme focuses on providing patient-centred quality healthcare, which is critical to transforming health. TIF reinitiates its commitment to be involved in a variety of initiatives and collaborations to improve healthcare quality and make it more patient-centred. Collaborations with other healthcare entities, nationally, regionally, and internationally, are a vital pillar of TIF's work.

Intensive preparatory work on the organisation of the next year’s events for the International Thalassaemia day has already begun and we will soon share with you a detailed programme for the month of May. More details will follow in upcoming Board Member Updates.

Plan proactively and let us know about your activities! TIF is in the process of creating a website dedicated to the International Thalassaemia Day with the purpose of sharing all the latest information with you and offering a platform for exchanging and sharing your activities and plans. More information will be announced soon on our social media and website.

We would like to inform you of the sad passing of our dearest collaborator and friend, Mr Ioannis Levidiotis. As a parent stricken by thalassemia, Mr Ioannis Levidiotis started dealing with issues concerning thalassaemia 35 years ago. In 1986, together with other patients and parents he had established the Pan-Hellenic Movement for Thalassaemia. Mr. Levidiotis had taken on the administrative aspects of the Association, being a member of the Board. He later on proposed the publication of the quarterly magazine "KINISIS for volunteers", an initiative which was later on accepted and which he had taken on his spare time and on a voluntary basis.

In 2004 he was elected Chairman of the Board of the Association. Having relevant expertise, but also the help of members of the Association, he undertook in 2007 the publication of the Greek edition of the "TIF Magazine" and many of the Greek versions of TIF’s publications and Guidelines, always on a voluntary basis. 

For his help, eagerness and efforts, TIF will always be indebted to him. He was a man who TIF could always turn to in difficult times, who showed genuine interest, and in whom we had complete confidence in.

Mr Ioannis Levidiotis was an extraordinary personality but he was an exceptionally wonderful person. He was all this until his last days for all who knew him.

May the memories help his family find peace.

Local Conference: “Challenges in the Management of Thalassaemia Major in UAE” (November 15, 2014)
Renowned experts in the field of haemoglobinopathies addressed the latest innovation advances and challenges regarding Thalassaemia Major in UAE during an event entitled “Challenges in the Management of Thalassaemia Major in UAE”, which was held at Jumeirah Emirates Towers, Dubai, UAE, on 15 November  2014.

We would like to alert you to some new clinical data from bluebird bio gene therapy studies that was released at the annual meeting of the American Society of Hematology in San Francisco. The data come from both a HGB-205 study (enrolling patients in France) and a HGB-204/Northstar study (enrolling patients in the US, Australia, and Thailand).

Key highlights
· The first four beta thalassemia major patients treated in these studies who have at least 3 months of follow-up are now all transfusion free support by rapid and robust production of the therapeutic globin from the gene vector. This also includes one patient who has the most severe B0/B0 genotype, verifying that this approach has broad applicability across all genotypes.
· The first ever sickle cell disease patient was also treated with gene therapy in the HGB-205 study in October.

Read more here

We would like to share an important update regarding the preliminary results from a Phase 2 Study presented during the 56th American Society of Hematology (ASH) Annual Meeting & Exposition on 7 December 2014 in San Francisco. The recent data have shown that Luspatercept (ACE-536) has increased Hemoglobin and decreased the transfusion burden and serum ferritin levels in Adults with Beta-Thalassemia. We are very excited about the data and looking forward to the advancement of the program to Phase 3 next year!

Read more on the ASH website here.

Stem Cell Gene Therapy for Sickle Cell Disease
Phase I study was conducted with the aim of assessing safety and feasibility, with secondary objectives to assess efficacy (engraftment, βAS3-globin gene expression, and effects on RBC function and clinical hematologic and disease parameters). (ITHANET 08/10/2014)
Read more

EMQN Best Practice Guidelines for Carrier Identification and Prenatal Diagnosis of the Haemoglobinopathies
The EMQN Best Practice Guidelines for molecular and haematology methods for carrier identification and prenatal diagnosis of the haemoglobinopathies have been recently published as a result of the EMQN haemoglobinopathies best practice meeting, which took place in Leiden, Neitherlands on 5–6 September 2012, and was jointly organised and financed by The European Molecular Genetics Quality Network and EuroGentest. (ITHANET 20/11/2014).
Read more

Gene therapy ends transfusion dependence for 4 beta-thalassemia patients
Two patients with beta-thalassemia have not needed transfusions for at least five months after treatment with the gene therapy LentiGlobin, according to a report from bluebird bio. Two patients who received the therapy in a previous study have continued to do well without transfusions nine and 12 months after treatment. (AABB 8/12/2014)
Read more

Simeprevir and telaprevir show similar efficacy as hepatitis C treatments
Researchers at the University of Pennsylvania in Philadelphia found simeprevir plus peginterferon and ribavirin was as effective as telaprevir plus peginterferon and ribavirin for patients with hepatitis C genotype 1 who did not respond to peginterferon and ribavirin alone. The findings appear in The Lancet Infectious Diseases. (AABB 16/12/2014)
Read more

Study identifies 53 promising FDA-approved drugs to treat Ebola
A study in the journal Emerging Microbes and Infections found 53 drugs that could potentially treat Ebola. Using high-speed technology, researchers at the National Institutes of Health and the Icahn School of Medicine went through a library of 2,816 compounds approved by the FDA for other conditions. The compounds include antidepressants, antibiotics, antihistamines and oncology treatments. (AABB 17/12/2014)
Read more

Fibrin-based drug is candidate to treat Ebola
The fibrin-derived peptide FX06 was used to treat two Ebola patients and should be tested further, according to researchers at Frankfurt University Hospital in Germany. The drug candidate is in clinical trials as a treatment for vascular leak syndrome. (AABB 18/12/2014)
Read more

Oral hepatitis C regimen receives FDA approval
The FDA has approved AbbVie's all-oral hepatitis C regimen Viekira Pak for use in patients with chronic HCV infection genotype 1, with or without cirrhosis. The regimen consists of ritonavir and new drugs ombitasvir, paritaprevir and dasabuvir. The AbbVie combination showed 95% to 100% cure rates in trials. (AABB 19/12/2014)
Read more