July 2015 | Volume 25, Issue 1
Dear Friends,

We are pleased to present our July issue of the TIF Newsletter. This issue highlights some of the many activities and events that have taken place in July as TIF is now preparing for the busyness of fall. Keep reading to find out more about all these exciting news!

Editorial Team
TIF Around the World

For the last 3 years, TIF has embarked on a new initiative, in the context of its continuous efforts to safeguard the quality of health care of patients with thalassaemia, residing all over the world. This initiative focused specifically on the education of patient/parent and health professional communities on the use of safe and effective drugs that are used in the management of thalassaemia and more importantly those that target to remove excess iron from the body i.e. iron chelators.

Within the realms of its new initiative that is scheduled to cover all regions of the world, TIF organised its first Round Table Meeting on the use of Generic drugs in thalassaemia, mapping the situation in the Middle East and North Africa region (MENA).

This meeting took place on Wednesday 29 July 2015, at the Chronic Care Centre, in Beirut, Lebanon – one of the Thalassaemia Reference Centres of the region, under the coordination of Dr Androulla Eleftheriou, Executive Director of TIF, and Dr Angastiniotis, TIF Medical Advisor, and the leadership of Prof Ali Taher, a member of TIF’s International Advisory Board and Head of its Regional Advisory Committee.

The Round Table meeting was in the format of a‘brainstorming’ activity of key medical treating physicians from the MENA countries with whom TIF hopes to form the start of a strong and active network of health professionals with intent to fight for safety and effectiveness of drugs for all patients.

TIF’s position is ‘Drug Efficacy and Patient Safety’ should always outweigh the costs!

We are delighted to inform you that Dr Androulla Eleftheriou, TIF Executive Director, on behalf of TIF, has participated in the Innovation for patients' Forum which took place in Basel, Switzerland, between 30 June and 2 July 2015.

This conference was very fruitful as it stimulated interaction between participants and supported the long term innovation. It also allowed TIF to network with other partners.

TIF Publications

Out Now!

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

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

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

28 July 2015 was World Hepatitis Day!
The theme for this year’s World Hepatitis Day is "Prevent hepatitis. Act now".






Viral hepatitis is caused by 5 distinct hepatitis viruses. Infection from these viruses results in approximately 1.45 million deaths each year. These viruses are transmitted through contaminated water and food, as well as by contact with blood or bodily fluids, through unsafe injections or transfusions. Infection also occurs from a mother to a child, or through sexual contact. Infection through all these routes of transmission can be prevented through proven and effective interventions. It is important for everyone to be aware of hepatitis and to learn how they can protect themselves from being infected.

Click here for more information!

We are pleased to inform you that the Health and Art (HEART) Group is planning to organize the 1st International Festival of Pediatric Patients’ Paintings (IFPPP) on 8 October 2015.

All children and adolescents (<18 years old), who were admitted in a hospital during their life, are invited to submit their paintings (drawings) to this festival.

We encourage paediatric patients to submit their artworks. More than 100 paintings from several countries have been received but hundreds of more artworks are expected to be received by the deadline.


Painting (Drawing) on an A4 page (297 mm × 210 mm), preferably horizontal!

Theme: Health

Required information: Name and Family name, Age (Date of Birth), City (Country), Tel (e-mail), Postal address, Disease name, Hospital name

Deadline for submission: August 24th, 2015
1- The original painting should be mailed to: Dr. Nima Rezaei, Children’s Medical Center Hospital, Gharib St, Keshavarz Blvd, Tehran 14194, IRAN
2- The scan copy of painting (with resolution of more than 300 dpi) should be e-mailed to: ifppp.heart@gmail.com

The top 200 selected artworks will be published in a special booklet and will be displayed in the museum of the festival venue.

In addition to the special prizes which will be granted to the top three winners, the flight ticket fees of 10 selected individuals will be reimbursed as well as the accommodation for them and their parents.
We encourage you to:

- Invite your friends and colleagues to help in announcing this festival in the children’s hospitals.
- Share four selfie short movies, preferably with a background of an attraction from your region saying the following two phrases: “1st International Festival of Pediatric Patients’ Paintings” and “Help Health with Art, and Give a Smile to a Beating HEART” in English and in your local language.

Movies should be emailed to ifppp.heart@gmail.com

The Patient group of the Balikatang Thalassemia Association in the Philippines has shared with us many excited developments:

Blood Assistance:
The Association has slowly forged partnership with the Philippine Blood Center, which invited its members to their annual "Dugong Bayani awards"" (Blood Heroes event) where thalassaemia patients thanked blood donors.

Following this event, a blood donation camp was held on 14 June 2015 during the Blood Donor's Day celebration. A good percentage of the blood donation was given to thalassemia patients free of charge!   The Balikatang Thalassemia Association also participated in a blood donation activity held in July.  

The Association is also in the process of establishing regular blood donation activities in collaboration with a local university specializing in thalassemia.

Congratulations to all the members of the Balikatang Thalassemia Association. We hope they continue their efforts with the same zeal!

Patients Invited to Apply for Distinguished Scholar Award

The Cooley’s Anemia Foundation is accepting applications from individuals with thalassemia for the 2015 CAF ApoPharma Distinguished Scholar Award.

CAF will award up to two scholarships to a U.S. citizen(s) with a clinically significant form of thalassemia pursuing doctoral studies in biomedical sciences, including medicine, pharmacy, nursing and basic research.  (Ph.D., M.D., D.D.S., Pharm.D., D.V.M, etc.) in the United States or abroad. Total annual funding available for the awards is $20,000.  Students enrolled in a doctoral program for the fall of 2015 are eligible to apply.

A clinically significant form of thalassemia would include alpha thalassemia major, beta thalassemia major, beta thalassemia intermedia, e beta thalassemia, haemoglobin H disease, or haemoglobin H disease-Constant Spring.

Application Information
Applications must be received at CAF by September 15, 2015.  There is not an application form; however, applicants should include all of the following:
- a personal statement of goals and professional objectives;
- a letter of reference from a member of the faculty in the program at the institution where the applicant is enrolled. If this is the applicant’s first year in the doctoral program, s/he may substitute a letter of recommendation from a member of the faculty at which undergraduate degree was obtained;
- a statement from patient’s treating physician confirming diagnosis as a thalassemia patient;
- a letter from bursar’s office of institution in which applicant is enrolled confirming applicant’s enrolment and including appropriate contact information for bursar’s office; and
contact information (address, email and phone) for the applicant.

In addition, all applicants must be registered with the Cooley’s Anemia Foundation. (Applicants who are unsure if they are registered with the Foundation should contact CAF Patient Services Manager Eileen Scott at eileen.s@thalassemia.org.
Patients can apply via email or regular mail. Email applications should be sent to info@thalassemia.org with the subject line “Distinguished Scholarship Application.” Those sending in applications via regular mail should address them to:
Scholarship Review Committee
Cooley’s Anemia Foundation
330 Seventh Avenue, Suite 200
New York, NY 10001

All applications will be reviewed by a diverse panel which may request additional information from applicants.

The Painted Turtle Camp
was held on 17 July, in Los Angeles, California, USA, where children with medical conditions celebrated just being kids!

Through innovative, camp-based programs that offer great fun and support, children with more than 30 medical conditions visited the Painted Turtle, reclaiming the joys of childhood.  The Painted Turtle has offered thousands of children and their families hope and encouragement through its Summer and Family Weekend camps since it opened its gates in 2004.

There is no billing department at The Painted Turtle—campers and their families attend free of charge. And there’s no limit to the amount of laughter campers take home with them either!
Learn more

Delegation Visits


We are thrilled to share with you that a TIF delegation visited Beijing, China between 5-7 July 2015. The TIF delegation was comprised of Dr Michael Angastiniotis - Medical Advisor and Dr Matheos Demetriades - Senior Countries Officer.

The objective of the visit was to establish contact with NGOs and charity organisations, who are actively concerned with thalassaemia, or can profitably contribute to TIF’s efforts to improve thalassaemia control in China, and to review the planned activities in the region with all relevant stakeholders.

During this visit the TIF delegates met with representatives of the Beijing Angel Mom Charity Foundation,  the China Philanthropy Research Centre, the Ministry of Civil Affairs, and the  Chine Organisation for Rare Diseases (CORD).

We are delighted to announce that TIF's is in the process of finalizing its new application, the Digital Library app!

This app provides users with a powerful platform containing all of TIF’s publications and informing them regarding all of TIF’s events and news.

The TIF Digital Library will be available soon on both the Google Market and the Apple Store!

Share our ThaliMe page on Facebook! We have some exciting news coming very soon!

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

Last opportunity to participate in a unique educational forum, the 2nd Pan-‪Asian Conference on ‪Haemoglobinopathies, the biggest regional event taking place in the city of Hanoi, ‪Vietnam!
Date: 26 & 27 September 2015

Register Now! Early Bird Registration has been extended until 20 August 2015!

Submit your abstracts, promote your work, and research! The deadline for Abstract Submission is 10 August 2015. Please send your Abstract to thalassaemia@cytanet.com.cy using the subject line ‘TIF2015 – Abstract’.

Visit the Conference website for further information at www.tifevents.orgor contact us at secretariat@tifevents.org

We look forward to seeing you in HaNoi, Vietnam!

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

More details about this programme here.

9th Annual Sickle Cell and Thalassaemia Advanced Conference

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

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

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

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

IAPO Seminar: Innovation, regulation and patient-centred healthcare – 24 August 2015, Panama City, Panama
Please save the date for the multi-stakeholder seminar in Latin America entitled, ‘Innovation, regulation and patient-centred healthcare.’
The main objective is for participants to explore current health policy issues taking into consideration the perspectives offered by a diverse groups of panellists. Innovation in health has raised the expectation level of patients, especially with regard to diagnoses where once there was very little hope. This creates a new sense of urgency for up-to-date and relevant regulatory processes to ensure continued innovation and patient access. High standards based on the latest scientific evidence are crucial for pharmacovigilance, patient safety, and patient-centred quality care.

If you have any questions, please contact Patricia Gaillard Olokose via email or skype: patricia.olokose. 

We are delighted to inform you that 60 participants took part in the EURORDIS member webinar on European Reference Networks (ERNs).  This webinar follows discussions on ERNs that took place at the EURORDIS Membership Meeting 2015.

All EURORDIS members were invited to join this webinar on 21 July to learn more about European Reference Networks (ERNs) and how member organisations can get involved in the first call for ERNs.

In order for ERNs to effectively serve the over 6000 existing rare diseases, they need to be organised according to disease areas or 'groupings', rather than to each individual disease. A grouping model has been brought forward in the 2013 EU Committee of Experts on Rare Diseases Recommendations on Rare Disease ERNs.

If you were unable to participate you can watch a video of the webinar (which includes a presentation by EURORDIS CEO Yann Le Cam and Research & Healthcare Director Matt Johnson, as well as a Q&A session) below.

Please find below:

Presentation given during webinar

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

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

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

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

September - Sickle Cell
Awareness Month!

SCTI will be running information sessions on 13 September in various areas of Dublin to raise awareness for Sickle Cell anaemia as part of our annual September Sickle Cell awareness month celebrations/activities.

If you are interested in being volunteers to act as missionaries for Sickle Cell awareness, please contact: info@sicklecellireland.ie or Telephone; 0870656807

Read more

The members of the Mevlana Solidarity Association for Thalassemia Patients and their Families in İzmir (Mevlana Talasemi Hastaları ve Aileleri Yardımlaşma Derneği ile İzmir) held a friendly football match in Izmir, on 9 August 2015.

The players of the match consisted of thalassemia patients who joined the game to create awareness about the disease. After the match, the members and President of the Association, gave information regarding thalassemia. The determination shown by thalassaemia patients while [laying this game shows the lesson that their life taught them: following appropriate and regular treatment increases the opportunity to have health and quality life.

Research & Therapeutic News

International guidelines address hepatitis B treatment, prevention
Clinical guidelines for chronic hepatitis B treatment and prevention have been released by the World Health Organization, and the document includes recommendations for low- and middle-income countries. Some 240 million people have chronic hepatitis B, according to estimates. "The guidelines are significant for parts of the world where there are no existing national guidelines and where the regional liver association guidelines ... cannot be applied [because of] limited resources," said Dr. Anna Lok, who helped develop the guidelines. (AABB 12/7/2015)
Read more

Global Blood Therapeutics prepares initial public offering
Global Blood Therapeutics hopes to raise $124.2 million in an initial public offering. The South San Francisco, Calif.-based firm intends to use the money to support the development of a treatment for sickle cell disease, as well as hypoxemic pulmonary disorders and hereditary angioedema. (AABB 31/7/2015)
Read more

Bluebird bio Reports Second Quarter 2015 Recent Operational Progress
- Presented promising new beta-thalassemia major and severe sickle cell disease data from HGB-205 study at EHA annual meeting
- Announced global regulatory strategy for LentiGlobin BB305 in beta-thalassemia major, with plans to pursue conditional and accelerated registration strategies in the E.U. and U.S., respectively
- Announced broad T cell oncology strategy and related collaborations
- Hired Philip Gregory, D. Phil., as Chief Scientific Officer
(Bluebird bio 06/08/2015)
Read more

Acceleron Pharma Reports Second Quarter 2015 Operational Results
– Completed luspatercept myelodysplastic syndromes phase 2 clinical trial
– FDA Fast Track Designations granted to luspatercept for the treatment of patients with beta-thalassemia
– Phase 3 clinical trials with luspatercept in lower risk myelodysplastic syndromes and beta-thalassemia expected to begin by year-end 2015
Read more

Keep Us Updated!
TIF encourages all its members to update their websites! We plan to upload your news and activities regularly and we will project important information from your Associations' websites.

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