Egypt coming into the light!
TIF’s work in Egypt is accelerating progress in this country. Egypt is a country in the Middle East with huge potential but in which great gaps still need to be bridged. There is an urgent need for the implementation of national programs to prevent this disease and ensure its proper treatment.

In this context, TIF was recently was invited by medical specialists of the region to provide its expertise and knowledge and to improve the quality of life thalassaemia patients in Egypt.

Therefore, TIF, represented by Dr Androulla Eleftheriou, TIF Executive Director, and Dr. Michael Angastiniotis, TIF Medical Advisor, conducted a delegation visit from 18 to 20 February 2015 to Egypt.
As part of this visit, many meetings were organized with state health officials. The delegates also met with the Minister of Health and Population of Egypt and had the opportunity to discuss the adoption and the implementation of a national prevention and control programs and policies by the Egyptian government which will improve care for patients with thalassaemia in the country. Distinguished Egyptian scientists were also present at this meeting, including Prof. Amal Beshlawy and Prof. Mona Hamdy, from Cairo University, and Dr. Naglaa Shaheen, from Children's Hospital Masr.

After the extensive discussions that followed, it was agreed that TIF would draft and prepare a memorandum in collaboration with Egyptian experts. This memorandum will later on be adopted at the national level by the Egyptian government.

TIF delegates also had the opportunity to participate in a workshop held on 19 February 2015 in Alexandria through presentations in the programme. This workshop aimed at reviewing the current situation in patient care, the national prevention program, and public awareness programs on thalassaemia. The TIF delegates have also had the opportunity to meet with the medical community and other National Health and Cairo University Officials.

TIF achieves important milestone: the Third Edition of the Guidelines for the Clinical Management of Transfusion Dependant Thalassaemia (TDT) officially presented at a Press Conference in Cyprus!

Following the official launching of the Third Edition of the Guidelines for the Clinical Management of Tranfusion Dependant Thalassaemia (TDT) during the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias (07-09 November 2014, Athens, Greece), TIF organised a press conference on 16 February 2015, at the Journalists House in Nicosia for the official presentation of  the Guidelines

This publication is an adaptation of the existing protocols on the treatment of thalassaemia. TIF, since 1999, focuses considerable effort for the establishment of protocols adhered by international experts in this area and by professionals in a large number of disciplines that contribute to the multidisciplinary care necessary for the holistic therapeutic approach of these diseases.

Honouring the Rare Disease Day! Workshop of the Cyprus Association for patients with Myasthenia Gravis, under C.A.R.D. auspices!
TIF has joined forces with the Cyprus Alliance for Rare Disorders (CARD) to show its solidarity for rare disease patients around the world!  The Cyprus Association for patients with Myasthenia Gravis organized a workshop on 28 February 2015 at the Cyprus Institute of Neurology and Genetics in Nicosia, Cyprus, within the European Awareness Week for Myasthenia Gravis to commemorate   the Rare Disease Day, honoured on the same day. The conference was held under the auspices of the Minister of Health and of the Cyprus Alliance for Rare Disorders (CARD) of which TIF is a founding member.

This workshop begun with a musical event performed by Richard Douclas and George Hadjigeorgiou, and was followed by the welcoming messages of the President of the Association, Ms. Anna Zannetou, and the Cyprus Health Minister, Dr. Philippos Patsalis. The event concluded with many interesting lectures that formed part of the workshop programme.

The Rare Disease Day is a patient-driven awareness day and we are delighted as a patient organisation to have taken part in this initiative and to have drawn attention to rare diseases and to the millions of people who are affected by them, including haemoglobinopathies such as thalassaemia and sickle cell disease which are also embraced within the family of rare diseases.

A first glance at TIF’s new digital library App!
TIF has undertaken an exciting new project revolving around the development of a mobile application for iOS and Android devices. The move into the mobile space attempts to create a more "immersive" experience for users, providing them with a powerful platform containing all of TIF’s publications and informing them regarding all of TIF’s events and news. This application enters into the digital age in a very clever and compelling way, offering users a simple way to have their favorite publications available on all of their devices at any place and any time.

It will consist of a digital bookshelf for TIF’s publications and it will enable the users to select a publication, download and read it, providing some stunningly-looking interactive features that harness the touch controls of mobile phones in a sensible and not at all intrusive way.

The application will also allow users to be informed regarding the latest news and events that TIF has planned through push notifications, alerts, and a digital calendar with all upcoming and past events

Stay tuned as more information will be available in our next updates and magazines!

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
  
  
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
• 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

A big round of applause goes out to the many individuals involved in the creation of the video.

The cooperation between all those involved in this year's video is symbolic of the unity and solidarity that families, professionals, policy makers, researchers and industry are demonstrating by living day-by-day, hand-in-hand with rare disease patients. 

Get involved today!

Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2015 video and show the world how to live in solidarity day-by-day, hand-in-hand.

The video has been translated in 25 languages

To view the Rare Disease Day Video, click here

The Staten Island Hilton Garden Inn has been set ablaze with merriment and dazzling dancing on Saturday, February 14.  That’s when the New Jersey chapter of Cooleys Anaemia Foundation (CAF) has hosted its annual “Let Your heart Dance.”

One of CAF’s most eagerly-anticipated annual events, the “Let Your Heart Dance” featured a full sit-down dinner, top shelf open bar, convivial cocktail reception and dancing!

The cocktail reception begun at 7:30; dinner commenced at 8:30 and the evening continues until 12:30 a.m.

There was simply no finer way to celebrate the Valentine’s Day holiday!

EPHA’s February Policy Coordination Meeting (PCM) has taken place on Thursday, 12 February 2015 at the EPHA office.

The objective of the EPHA policy-coordination meetings is to bring the membership together as a think tank, and consolidate their position on the main policy vectors of the organisation.

This Policy coordination meetings discussed the organisation’s strategy on the EU Environment and Health Action Plan (SCALE), REACH and chemicals policy, the Pan-European environment and health process, public participation and the right to know (the Aarhus Convention and PRTR Protocol), the EU’s mercury policy and public health, climate change and health as well as some emerging issues such debrominated flame retardants, GMOs, the Water Directive, and electromagnetic radiation.

All background documents, including their corresponding Annexes, are uploaded to the EPHA website (members' only section): here. 

The EUPATI 2015 Workshop will take place on the 23 April 2015, in  Dublin, Ireland.

The EUPATI project aims to create a patient expert programme focused on knowledge about the process of therapeutic innovation and drug development. This 2015 workshop will be designed to draw on the research work effectuated in 2014 by the project, involving patients and citizens across Europe, and to get views on successful examples of information sharing. 

To find out more about the full agenda, please go here.

IAPO’s upcoming 15th International Conference on Integrated Care.
The Conference titled 'Complex Needs, Integrated Solutions: Engaging, empowering and enabling people for active and healthy living', will be held at the Sheraton Grand Hotel, Edinburgh, Scotland, 25-27 March 2015.
The aim of the Conference is to exchange knowledge, experience and new ideas on the design and delivery of integrated health and social care.

Interested in attending?
IAPO is giving away five free places to its members on a first come first served basis. This does not include travel, accommodation, food or any other expenses incurred.

Fore more information, visit IAPO's website

Sangamo receives approval for trial of beta-thalassemia gene therapy
The FDA has accepted Sangamo BioSciences' investigational new drug application for its genome editing technology for use in the treatment of transfusion-dependent beta-thalassemia patients. A Phase I/II clinical trial of ZFP Therapeutic, which was developed by Sangamo and Biogen Idec, is expected to begin this year. (AABB 05/02/2015)
Read more

Bluebird's gene therapy for beta-thalassemia receives breakthrough status
The FDA has granted breakthrough therapy designation to bluebird bio's investigational gene therapy for transfusion-dependent patients with beta-thalassemia. The therapy involves inserting a functional beta-globin gene into stem cells, which are transplanted back into the patient. (AABB 02/02/2015),
Read more

Study supports hepatitis B screening with immunosuppressive therapy
Patients treated with chemotherapy or immunosuppressive therapy and those who received hematopoietic stem cell or solid organ transplants should be screened for active or prior hepatitis B infection, according to a study in the journal Hepatology. Antiviral treatment should be used as needed to prevent reactivation, the authors wrote. (AABB 11/02/2015)
Read more

Study assesses safety of interferon-free regimen in cases of HIV/hepatitis C co-infection
Patients with HIV and hepatitis C who were treated with sofosbuvir and ribavirin reported outcomes comparable to those of patients with HCV monoinfection, according to a study in The Journal of Infectious Diseases. Researchers analyzed patient-reported outcomes in a pooled analysis of 497 patients with co-infection who were treated in two clinical trials. (AABB 26/01/2015)
Read more

Novavax initiates clinical trial of Ebola vaccine
Novavax has begun early-stage trials of its Ebola vaccine in 230 healthy adult volunteers in Australia. The company has said it has the capacity to manufacture millions of doses each month. (AABB 12/02/2015)
Read more

Delegation Visits will be announced in our next Newsletter

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.

Mark your calendars for the upcoming International Thalassaemia Day on the 8th of May 2015 -8th of May 2015!
!
Our website and toolkit for the International Thalassaemia Day Toolkit have already been launched fuelling the spirit of the International Thalassaemia Day!

Preparations have already begun for this year’s International Thalassaemia Day 2015!

TIF offers its annual campaign communication material to help build awareness for thalassaemia.  Share it to show your support for our 2015 campaign!

Materials available include:

• Official International Thalassaemia Day poster
• Official International Thalassaemia Day logo
• Official International Thalassaemia Day video (coming soon)
• Website
• Email banner

Plan your event!
Associations, organisations, health professionals, and academia are encouraged to share their events with us!
Ignite the spirit of the International Thalassaemia Day as our videos and a detailed plan of activities for May will soon be uploaded on our website and social media!

To find the International Thalassaemia Day campaign kit, please visit our website especially dedicated to honour this day, by clicking here!

Making a difference: Meetings with Health officials for the future of rare diseases
Following the publication of legislations on the implementation of the of the Cyprus National Health Plan by the Ministry of Health , the Cyprus Alliance for Rare Disorders (C.A.R.D.), of which TIF is a founding member, has proceeded to the development of a position paper outlining the needs of the patient community. The Position Paper has been submitted to various stakeholders, including members of the Parliament, the Ministry of Health, Ministry of Labour and Social Insurance, Ministry of Finance amongst others.

As a result of the submission of this position paper, meetings have been held throughout February between these stakeholders and C.A.R.D. members, led by Dr Androulla Eleftheriou (TIF Executive Director) to discuss the concerns of the rare disease community in light of the new legislation. Notably, the President of C.A.R.D., Mr Panos Englezos, was received by the President of the House of Representatives to discuss these issues. Among the officials approached were the President of the House of Representatives of the Republic of Cyprus, the Deputy Director General of the Health Insurance Office Agency (HIO), Representatives of the Pharmaceutical Services of the Ministry of Health, and the Head of the Department of Economic Research and the European Union of the Cyprus Ministry of Finance.

The discussions revolved mainly around the realignments currently taking place in Cyprus regarding two pieces of legislation which have been developed by the Cyprus Ministry of Health and have been submitted to the Parliament of Cyprus for discussion and ratification. The two pieces of legislation refer to the development of a National Health Plan and the creation of autonomous Hospital Units.

On the occasion of these developments, organisations such as the Cyprus Alliance for Rare Diseases (CARD) and TIF must continue joining forces 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 among the family of rare diseases in Europe but also globally through the EC Communication on Action in the field of Rare Diseases, 2009/C 151/02.

Safeguarding the rights of patients with  Thalassaemia and Viral Hepatitis
TIF, representing and safeguarding the rights of patients with Haemoglobin disorders (Hb) across the world for quality health care and services, has decided to act and react on the poor or lack of recognition of the importance of providing antiviral treatment to patients with thalassaemia infected with Hepatitis  through giving a particular focus to  viral Hepatitis C in relation to thalassaemia’. In this context, a manifesto was compiled titled ‘Viral Hepatitis in Thalassaemia’.

This paper which has been revised and upgraded since its official launching during the 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias (07-09 November 2014, Athens, Greece), due to many advances regarding therapeutic protocols for Hepatitis C, has been officially presented to the representatives of the European Commission, the European Parliament; the Minister of Health of Greece, the President of the International Organisation for Migration (IMO) during the inaugural ceremony of the .
We are delighted to announce to you that this document which has now been officially endorsed by the European Association for the Study of liver (EASL) and the European Organisation for Rare diseases (EURORDIS) and it will be delivered to the European Liver Patients’ Association (ELPA) and the National Health Authorities in the EU and beyond.

TIF's Photography Contest for the International Thalassaemia Day 2015 is set to begin! 
For a second consecutive year, we are proud to announce our 2nd International Photography Contest 2015 which is launched with the aim of creating awareness about thalassaemia, in the context of the International Thalassaemia Day, honoured 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, 31 March 2015.

Subject
The subject of this photography contest is based on this year’s theme for the 22nd International Thalassaemia Day, which is "Enhancing partnership towards patient-centred health systems: good health adds life to years!"

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
All others will be given a certificate of participation.

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 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.
More information has been uploaded on our website! 

Send us your photograph!

2nd Pan-Asian Conference on Haemoglobinopathies
Vietnam, September 2015

Sponsorship Packages now available!

TIF’s Educational Programme expanded! Renzo Galanello Training Fellowship Programme with the support of Novartis Pharma

General information
TIF has developed, with the support of Novartis Pharma, a fellowship programme in collaboration with the Whittington Hospital NHS Trust in London, UK.

Head: Dr Farrukh Shah, Consultant Hematologist

Duration: The fellowship offers 2 – 4 month support (depending on the level of knowledge and needs) for one or two physicians per year.

Venue: Training Centre: Whittington Hospital NHS Trust in London, UK, Magdala Avenue, N19 5NF, London, UK.

Starting Period: The course begins each September.

Funding: 

• A stipend of $2000 USD/month for each successful candidate, which intends to cover the successful candidate’s accommodation, transportation and other living expenses. Any expenses above this amount will be the responsibility of the successful candidate.
• A fee of up to $500 USD for each candidate to the training centre for its administrative needs.
• In addition to the above, the Fellowship will cover each successful candidate’s airfare (economy class) to and from his country.

How to apply
The application period will start on 1st of May and end on the 31st of May 2015. The Application Form will be available on TIF’s website and should be completed and returned to the Thalassaemia International Federation, Cyprus, by email, at thalassaemia@cytanet.com.cy or tif@thalassaemia.org.cy, or by fax at 00357-22-314552, with the subject line “TIF-Renzo Galanello Fellowship”. In the event you cannot use email or fax, a postal address is denoted on the Application Form.

More details about the terms and conditions, the application, as well as the programme are available here.

 Canadian Cancer Survivor Network's webinar!

Throughout 2015 the Canadian Cancer Survivor Network (CCSN) is offering a series of webinars designed to give information to help engage on important issues facing patients and caregivers.

The webinar entitled: "how patient groups can have more say in the drug approval process: from regulatory authorization to health system access." has taken place on Thursday, 19 February 2015. 

The webinar has been co-hosted by Bill Dempster and Gerry Jeffcott of 3Sixty Public Affairs. Bill and Gerry have walked through the different steps in bringing a new medicine through the regulatory review process, health technology assessment and funding, highlighting where patients can make a difference, and how their role is rapidly expanding.

This webinar focused on important topics such as increasing patient voice in the lifecycle of medicines, the criteria for successful involvement of patients in regulatory, HTA and reimbursement processes, the current impact of patient input to HTA and funding decision, current obstacles/barriers for successful patient involvement, and the strategies/approaches to address them.

The Registration for the Cooley's Anemia Foundation 2015 Care Walk Is Now Open! Care Walk is the Cooley's Anemia Foundation's annual fundraising event and opportunity to bring together the thalassaemia community and its supporters around the country. The Care Walk on May 3, 2015 will raise funds to fight thalassaemia!


Care Walk is unique because it offers  flexibility: Participants may attend an already organized Walk or they may determine where they want to walk and plan an event that works for them! Join Cooley's Anaemia Foundation on May 3 2015!

More information and to register, click here

We are proud to share some very important news from the Thalassaemia Patients Friends Society (TPFS).  TPFS has carried out many activities. These activities aimed to support thalassaemia patients throughout Palestine including the Gaza Strip. These activities covered many aspects; health, social, education, awareness, blood donation campaigns aspects.

More specifically, Thalassaemia Patients Friends Society (TPFS) has delivered shipment which was donated by the Emirates Red Crescent and contained medicine for iron chelation, medicines and supplies such as filters, blood bags and other items to the Palestinian Ministry of Health.  Part of these shipments has been directed to the Gaza Strip.

TPFS has also joined its voice with Palestinian Red Crescent to donate medical supplies or money to the Red Crescent in Syria, in order to tend to the Palestinian refugees in Syria affected by thalassaemia. Many of them have been displaced from their homes to temporary camps inside Syria and in the neighbouring Lebanon. There were many deaths among these refugees due to the lack of medical supplies.

Furthermore, TPFS has carried out important work in Lebanon visiting Palestinian Camps in Lebanon to check on the status of thalassaemia patients in the country and the medical services provided to them in order to improve the conditions in the area. Several meetings took place with many national and international health organizations. Among these organizations was the Palestinian Chronic Care Centre, which already had several thalassaemia patients in its care. In this context, an agreement was signed to conduct tests for all registered Palestinian thalassaemia patients in Lebanon to establish a database for them. A second agreement of partnership and cooperation was signed with the Lebanese Voluntary Work Centre to improve the medical services provided for the Palestinian thalassaemia patients in Lebanon

Rallying United Nations organizations in the fight against non-communicable diseases
Oleg Chestnov a, Menno Van Hilten a, Colin McIff b & Alexey Kulikov c

Non communicable diseases (NCDs), namely cardiovascular diseases, cancers, chronic respiratory diseases and diabetes, cause 63% of the world’s total mortality.Of the premature deaths from NCDs that occur in people between the ages of 30 and 70 years, 86% – i.e. approximately 12 million – occur in developing countries. The cumulative economic losses to low- and middle-income countries from the major NCDs are expected to surpass seven trillion United States dollars (US$) over the period from 2011 to 2025 (an average of nearly US$ 500 billion per year).3

As NCDs are largely preventable, however, the number of premature deaths can be greatly reduced. This effort is supported by a vast body of evidence on effective interventions for reducing shared risk factors – tobacco use, unhealthy diets, physical inactivity and harmful use of alcohol – and improving disease management. The Moscow Declaration on Noncommunicable Diseases,  endorsed by ministers of health in May 2011, and the Political Declaration of the High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases,endorsed by heads of state and government in September 2011, have been decisive in raising the priority given to the prevention and control of NCDs on the agendas of meetings of national and international leaders. Because national policies in sectors other than health have a major bearing on the risk factors for NCDs, health gains can be achieved much more readily by influencing public policies in sectors outside health than by making changes in health policy alone. Many governments in low- and middle-income countries have realized the quick gains to be made against the NCD epidemic by investing modestly in interventions for enabling health systems to respond and reducing exposure to shared risk factors, but many are struggling to move from commitment to action.

The demand for “how to” policy advice to support national efforts is very high. According to an analysis of 144 World Health Organization (WHO) country cooperation strategies that national authorities agreed to jointly, 136 strategies included requests for technical support for the prevention and control of NCDs. Nonetheless, current plans for meeting individual country needs in this area are inadequate and will need to be replaced by a more holistic approach to meet the rapidly growing demand from low- and middle-income countries.

The 2013 Substantive Session of the Economic and Social Council (ECOSOC) marked a turning point in addressing this deficit. On 22 July 2013, ECOSOC adopted a resolution requesting the Secretary-General of the United Nations (UN) to establish a United Nations Interagency Task Force on the Prevention and Control of Noncommunicable Diseases. The resolution, proposed on behalf of 109 co-sponsoring Member States of the UN, was developed under the leadership of the Russian Federation.

The Task Force, created by expanding the mandate of the existing United Nations Ad Hoc Interagency Task Force on Tobacco Control, will coordinate the activities of relevant UN organizations and other intergovernmental organizations as they support countries in their efforts to implement the WHO Global NCD Action Plan 2013–2020. The Plan, which was endorsed by the World Health Assembly in May 2013, provides Member States, WHO and other UN organizations, intergovernmental organizations, nongovernmental organizations and the private sector with a road map and menu of policy options to realize the commitments made by heads of state and governments in the UN Political Declaration on NCDs. When implemented collectively between 2013 and 2020, these will contribute to progress on nine voluntary global targets, including a 25% relative reduction in premature mortality from NCDs by 2025.

WHO will convene and lead the Task Force. As a first step, and in full consultation with WHO’s Member States, draft terms of reference, including a division of tasks and responsibilities, will be developed for consideration by Member States at a formal meeting convened by WHO in Geneva on 13 November 2013. This will be followed by the development of programmes to operationalize these tasks and responsibilities and transfer knowledge and technical expertise on NCDs to low- and middle-income countries.

By providing a platform for joint action that reflects how some of the most pressing development challenges are addressed by those who face them daily, the Task Force can play an important role in helping countries to improve their health systems and shape public policies outside the health sector for years to come. It can support governments in their efforts to reduce people’s exposure to the risk factors for NCDs; enable health systems to respond to enormous challenges; set national targets and measure results; advance multisectoral action; strengthen national capacities; and promote international cooperation.
UN organizations are preparing to raise the priority accorded to NCDs on the health and development agendas. This is therefore a critical time to make the world more aware of the fact that NCDs constitute one of the major challenges for development in the 21st century and of the new opportunities that lie ahead for making global progress against these diseases.

References

Available here