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May 2015 | Volume 23, Issue 1
Dear Friends,
 

This month is marked by two major events for TIF: the receipt of the Dr Lee Jong-wook Memorial Prize by the World Health Organisation (WHO) and the celebrations for the International Thalassaemia Day, honoured each year on 8 May all over the world! Therefore, this month's newsletter is dedicated to the Dr Lee Jong-wook Memorial Prize and the International Thalassaemia Day, providing information on some of TIF's many exciting activities which have been organised in the context of TIF's internationally renowned educational program. Read more about these activities in the pages to follow!

Editorial Team
TIF Around the World

One of the most prestigious awards granted to TIF by the World Health Organization (WHO)!
We are extremely proud to announce that the prestigious Dr Lee Jong-wook Memorial Prize has been granted to the Thalassaemia International Federation (TIF) for its outstanding global contribution in the field of public health. The award ceremony was held during the 68th World Health Assembly (68th WHA) on 21 May 2015, in Geneva.

The prize was received by Dr Androulla Eleftheriou, TIF Executive Director. Mr. Panos Englezos, TIF President and Mr. George Konstantinou, Assistant Secretary of the TIF Board of Directors were also present at this formal occasion.

TIF’s success through the years since its establishment in 1987, undoubtedly underlines and demonstrates the significant impact of patients/ parents’ organisations can have on the promotion of policies and programmes, disease specific, but also health oriented ones.

The empowerment of patients and parents across geographic, cultural, religious, social and linguistic borders and their transformation into equal partners with national and international health bodies in their journey has been our major success and will continue to constitute the main focus of work.

TIF was privileged to be working in official relations with WHO since 1996 promoting and contributing to many of its programmes, disease specific and public health ones, as an important pillar of its activities.
TIF’s Board of Directors and the global haemoglobinopathy family across 63 countries worldwide express their most sincere appreciation to those who have shown confidence and have recognised its impact and value clearly reflected through the receipt of this prestigious award.

We express our continued and full commitment not only to keep but to strengthen the momentum across the world in many ways through enhancing our contribution to the relevant programmes of WHO.

TIF’s Photography Contest for the International Thalassaemia Day 2015!

We are proud to announce our International Photography Contest 2015, has ended and the selection process is underway! The aim of the contest was to create awareness about thalassaemia in the context of the International Thalassaemia Day.


Deadline:

The deadline for this year’s competition has ended on Tuesday 31 March 2015.

Subject:

The subject of this year’s photography contest was based on this year’s theme for the International Thalassaemia Day 2015, which is “Enhancing Partnerships 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

Stay tuned as the winners of this year's photography contest will be announced shortly on our social media.

Blood Donation dedicated to the International Thalassaemia Day!

Blood donation drives dedicated to the International Thalassaemia Day! The Cyprus Blood Centre in collaboration with the Nicosia Municipality has decided to devote the blood drives held on the 8th of May to the Thalassaemia International Federation and to the International Thalassaemia Day.

TIF Board Meeting, London, UK!

We are pleased to announce that TIF Board Members attended the Board of Directors’ Meeting of the Thalassaemia International Federation, which was held at the Hilton London Kensington in UK, between 2-3 May 2015.


During this meeting a number of key topics were presented and discussed, including aligning joint efforts, and identifying and planning future action.

Egypt
Dr Michael Angastiniotis, TIF medical Advisor and Dr Androulla Eleftheriou , TIF Executive Director, were invited to participate in a high level workshop entitled “The Laboratory Medicine: Digging for More Treasures’ Egyptian Society of Laboratory Science”. This workshop took place,  in Cairo, Egypt, from 17 to 20 April 2015.

Dr Michael Angastiniotis participated in this workshop though the delivery of a lecture on the prevention of  thalassaemia in a developing country.

In the context of this visit, Dr Angastiniotis met with leading medical experts and discussed the issue of the Memorandum of Understanding that TIF has constructed and developed in collaboration with the Egyptian Ministry of Health. TIF is currently in anticipation for it to be signed  by the Egypt Ministry of Health so that TIF’s activities and actions can be tailored in a more framed way  according to the country’s needs.

 
TIF Publications

Out Now!
Publications

  • 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


The Thalassaemia Society of Pakistan celebrated the International thalassaemia Day through an awareness campaign in collaboration with major educational institutions of the city.  Lectures, seminars and a walk were organized at the Liberty market roundabout, a commercial hub of the most populated area of the city.

A large number of patients their parents, social workers and volunteers gathered there to create awareness about thalassaemia. Candles and lanterns were lit to show solidarity to all thalassaemics of the world.

Children presented a colourful program through various performances. Gifts, certificates, shields and toys were distributed to all children present.



Furthermore, the Fatimid Foundation has celebrated this day keeping in line with the theme of this years’ International Thalassaemia Day.

A symposium which included a programme for children was arranged to celebrate the day. Speakers presented papers on the journey of Thalassaemia Prevention through the work of the Fatimid Foundation, and the role of the association when it comes to the management of this disease.

After the scientific session, patients took part in many fun activities, such as henna sessions, singing, dancing and painting. Gifts, certificates and shields were given to participants of the event.

On the occasion of the commemoration of the International Thalassemia Day on Friday, May 8, the Thalassemia Association of Argentina together with the Network of Transfusion Medicine (GCABA) organised a campaign for voluntary Blood Donation and registration of patients at the National Bone Marrow Registry of local Hospitals.

The National Blood Plan of the Ministry of Health of the country also supported and contributed in this effort, by offering mobile blood samples.

During this event, brochures about the importance of donating blood for patients with thalassaemia were handed out to all those who were present at this event. The campaign was a success with more than  90 participants who also donated blood.

The Thalassemia Research at Children’s Hospital, (UCSF) in Oakland organised the World Thalassemia Day 14th Annual Blood Drive, on 7 May 2015, at its premises in Oakland, United States. In addition, on 9 May the  Root in the Boot Walkathon at Lafayette Reservoir, Lafayette, CA, USA. The aim of this event was to obtain funds per walker for the Thalassemia Research at Children’s Hospital, Oakland.

In Bangladesh the International Thalassaemia Day was honoured with the organisation of a celebratory event at the Thalassaemia Welfare Centre of Bangladesh, Chittagong.

The event comprised of many fun activities for patients, including lottery draws and discussion sessions. The activities revolved mainly around spreading awareness and knowledge about thalassaemia.


Furthermore, the Bangladesh Thalassaemia Society honoured the International Thalassaemia Day -2015, as every year with the organisation of a round table discussion at the CIRDAP Conference Hall.



An elaborate discussion took place on the awareness, prevention & treatment of thalassaemic patients.  The round table discussion was presided by Eng. O G Rabbany, President, Bangladesh Thalassaemia Society. Haematologists, paediatricians, neonatologists, surgeons, eminent experts medical practitioners, representatives of the Youth Club of Bangladesh and the Medicine Club of Bangladesh, and other patients’ associations were present at this event.

In addition, the association has appointed the famous actor & social activist, Sara Begum Kobori, as the Bangladeshi Ambassador for Thalassaemia. It is important to note that the Honourable President of the Republic of Bangladesh, the Honourable Prime Minister of the Republic of Bangladesh, the Health Minister, the Health Secretary, the Director General of the Ministry of Health gave publicity to the topic of thalassaemia through the delivery of messages in the media expressing their commitment to assist in the future to prevent Thalassaemia.

Research & Therapeutic News

US Food and ‪Drug‬ Administration (‪‎FDA‬) has approved ‪‎JadenuTM‬
We are thrilled to announce that the US Food and ‪Drug‬ Administration (‪‎FDA‬) has approved ‪‎JadenuTM‬ (deferasirox) tablets, a new oral formulation of Exjade® (deferasirox) tablets for oral suspension, for the ‪#‎treatment‬ of chronic iron overload due to blood transfusions in patients 2 years of age and older, and chronic iron overload in non-transfusion-dependent thalassemia syndromes (NTDT) in patients 10 years of age and older. Jadenu is the only once-daily oral iron chelator that can be swallowed whole.
Read more

Gene editing restores fetal hemoglobin in lab study of sickle cell anemia
Scientists in Australia have edited a gene in red blood cell precursor cells to increase the expression of fetal hemoglobin in a laboratory study. They used gene-editing proteins to introduce a beneficial mutation carried by some people with sickle cell disease that boosts the production of oxygen-carrying hemoglobin, according to findings reported in the journal Nature Communications.(AABB 15/05/2015)
Read more

Study assesses rate of use for recommended sickle-cell drug
In a study involving 700 patients with sickle-cell disease who met criteria for recommended use of hydroxyurea, only 23% were receiving the therapy. The findings were reported in the Journal of the American Medical Association (AABB 01/05/2015).
Read more

Beta-thalassemia drug from Celgene, Acceleron receives FDA fast-track status
Celgene's and Acceleron Pharma's luspatercept, a modified activin receptor type IIB fusion protein, has secured fast-track status from the FDA as a treatment for patients with transfusion-dependent or nontransfusion-dependent beta-thalassemia. A midstage trial of the drug is underway in beta-thalassemia and myelodysplastic syndrome patients (AABB 19/05/2015).
Read more


Researchers genetically modify beta-thalassemia gene in human embryos

For the first time, researchers reported editing a gene in a human embryo. Chinese researchers used CRISPR/Cas9 gene-editing technology to replace the defective beta-globin gene responsible for beta-thalassemia in nonviable human zygotes. The findings were reported in the journal Protein & Cell. Many experts recommend against clinical use of human germ line editing (AABB 19/05/2015).
Read more

Merck seeks FDA approval for hepatitis C combination treatment
A new drug application was submitted to the FDA by Merck for its experimental grazoprevir and elbasvir combination as a treatment for chronic hepatitis C. The company also plans to file applications in Europe and with other regulators this year (AABB 28/05/2015).
Read more

Delegation Visits

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.


A closer look at the International Thalassaemia Day on the 8th of May 2015!

 

 May 6            Gala Dinner “Precious Rubies”,  Presidential Palace, Nicosia
The evening of 6 May 2015 was landmarked by an exquisitely formal Musical Evening and Gala Dinner which was organized by the ‎Thalassaemia International Federation (TIF) for the International Thalassaemia Day honoured every year on 8 May. The event, entitled "Precious Rubies", took place at the Presidential Palace in Nicosia, under the auspices and in the presence of His Excellency President of the Republic of Cyprus, Mr. Nikos Anastasiadis, and the Honourable First Lady, Ms. Andri Anastasiadou.

Present at the formal ‪#‎thalassaemia Musical Evening and ‪‎gala Dinner, were the Royal Couple of the United Arab Emirates (UAE), His Highness Sheikh Dr Sultan Bin Khalifa Al Nahyan - Advisor to the Resident of UAE , President of Sultan Bin Khalifa Al Nahyan Humanitarian and Scientific Foundation and Her Highness Sheikha Sheikha Bint Seif Al Nahyan - Vice President of the Foundation, Chairperson of Emirates Thalassemia Society and Board Member of TIF.

Ministers, Ambassadors, Diplomatic personalities, representatives of Official international, regional and national Bodies, health and non-health related, international health experts, and a large number of state officials, patient organizations and scientific medical professionals both in Cyprus and abroad attended this event.

 

The formal thalassaemia ‎Musical Evening and gala Dinner started with the opening speeches of Mr. Panos Englezos, President of TIF and of His Excellency Mr. Nikos Anastasiadis, President of the Republic of Cyprus. During the President’s speech, the Dr Lee-Jong Wook Memorial Prize for Public Health prize which was granted by the World Health Organisation to TIF, was officially announced. This award, which is the highest prize in the field of public health, is granted internationally by the W.H.O. to NGO’s with outstanding contribution in this field.

The musical programme was marked by a musical journey through the notes of the Cyprus Young Strings Soloists under the Artistic Direction of Prof Matheos Kariolou, Artistic Director of the Musical Talent Development Program, Cyprus Ministry of Education and Culture, and the piano accompaniment of Jana Drhov. It then continued with a colourful voyage into the sounds of well known songs from France, Greece, Italy, Brazil, Spain, Portugal and much more. Finding Edith Piaf, Nat King Cole, Manos Hadjidakis, Yves Montand, Rita Hayworth, Frank Sinatra and many more great performers of our times. The voice of the Paris-based singer and songwriter Vakia Stavrou combined with the piano of Argyro Christodoulides, blended brio with sweet nostalgia”

Closing the event, the official anthem for thalassaemia, composed by Mr. George Theofanous, world renowned composer, was presented for the first time during the event. The lyricist of the hymn is Mr. Stavros Stavrou and it was sung by the children from the Musical Workshop of Mr. George Theofanous.
We would like to express a special thank you to Dr Erato Kozakou-Marcoullis, Former Minister of Foreign Affairs of Cyprus, whom TIF has appointed Ambassador for Thalassaemia, and Mr George Theophanous, our Musical Ambassador for their support and contribution to advocating the rights of thalassaemia patients .

Toolkit for the International Thalassaemia Day was created!
Materials available include:

  • Official International Thalassaemia Day poster Official International Thalassaemia Day logo
  • Official International Thalassaemia Day video
  • Email banner

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

We proudly present to you our video, created for the International ‎Thalassaemia Day, “Precious Rubies” underscoring the preciousness of blood and in particular of the red blood cells within it, which have the same shape and colour as rubies. The preciousness of expensive rubies, are associated with the preciousness of blood, but also with that of the contribution of each involved stakeholder in the fight for the treatment of thalassemia.

Click here to view it!

Prof Dimitris Loukopoulos, TIF's Medical Maghreb Coordinator, the national Association for Thalassaemia in Algeria and the Algerian Haematology Association, have organised a press conference and a celebratory meeting/workshop in May 2015, which has taken place in the context of the International Thalassaemia Day.

The celebratory meeting/workshop falls within TIF’s plans to perpetuate awareness and to further sensitize the community as well as local health authorities about thalassaemia in Algeria.

Local health authorities and the medical community have attended the celebratory meeting/workshop.

An official delegation visit was realised on 20 April 2015, in Nicosia, Cyprus, by a group of laboratory scientists, medical specialists, and public health officials of the Ministry of Health of Kuwait in the context of their country’s collaboration with the Cyprus Ministry of Health.

The purpose of the visit was the exchange of information and experience between Cyprus and Kuwait on the prevention and management of thalassaemia.

During their visit, workshops were organised at the Thalassaemia Centre of  the Makarios Hospital, Nicosia, Cyprus, on the topic of the prevention and management of thalassaemia. The group of specialists were informed about the prevention programme and the management protocol that is already in place in the Cyprus Thalassaemia Centre  for its patients.

The Delegates of the Kuwait Group were also welcomed at the TIF Headquarters, where the TIF President,  Mr Panos Englezos, and TIF Executive  Director, Dr Androulla Eleftheriou, elaborated on the Federation’s activities and the ways through which support  is provided to patients, parents, and the  medical community around the world. The venues of collaboration between TIF and policy makers regarding issues of prevention and management of this disease also formed a part of these discussions.

The Kuwait group expressed their interest to collaborate for the compilation of a scheme for the prevention of thalassaemia.
The Minutes of this visit  are available in the Annexes Section of the Board Member Update.

We are overjoyed to see that the Facebook page created for our new app, ThaliMe, has reached over 300 likes! Share our ThaliMe page! We have some exciting news coming very soon!

TIF at the EPF Annual General Meeting in Brussels!

TIF, represented by Dr Androulla Eleftheriou, TIF Executive Director, has attended the EPF Annual General Meeting (AGM) which has taken place in Brussels on 19 May 2015.
The Annual General Meeting, was an excellent opportunity to learn about what has been achieved in 2014 and to discuss and adopt the strategic priorities for the year to come, to meet colleagues from all around Europe, exchange ideas of common interest and celebrate being part of the European Patients’ Movement.

The elections for the board have also taken place at the AGM. The AGM was also followed by a two-day conference “Empowered Patients are an asset to society” on 20-21 May 2015. This will mark the launch of our major campaign on Patient Empowerment that will run until June 2016.

A lot is happening at EU level around the empowerment of patients. We, the patients, therefore want to be more active in the management of our own health so this campaign will take the European discussions a crucial next step forward – towards concrete actions at practical and political levels, led by the patient community in partnership with all relevant stakeholders.

The draft programme is available here. The conference will include plenary and parallel workshop sessions.

We are pleased to share with you that TIF, represented by Mrs Lily Cannon, TIF Administrations Manager, is currently in Madrid attending the EURORDIS Membership Meeting (EMM 2015) which is taking place between 29 - 30 May.

Each year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease.

The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance policies and services for rare disease patients in their country and local communities. The EURORDIS Membership Meeting provides an opportunity for EURORDIS members to network, sharing best practices and increasing knowledge of issues integral to member organisations and the rare disease community and environment in each member’s country.

We are thrilled to present our Video Challenge Competition winners! We are so excited to have received so many original submissions that blew us away! Each video highlights the story behind great individuals affected by thalassaemia, whether patients or parents, and the incredible struggles they have endured to achieve the greatness they exemplify today.


The submissions awarded the most points by voters were declared winners and are presented below:





Winner of the First Prize
Marsha De Salvatore • Title: Comedy Therapy






Winner of the Second Prize
Josephine Bila • Title: Thalassaemia or Not, We Are All Born Magnificent





Winner of the Third Prize 
Name: Shaheen Essani Rao • Title: Zaid and His Signatures


We would like to thank each and every one of you for your participation. We could not have done it without your help! Hear their voices on our website! To view the submitted videos, please visit the following link.

In Egypt, the 16th  National Thalassemia Conference was organised to commemorate the International Thalassaemia Day, between 6-7 May 2015, in Cairo.

Various topics regarding thalassemia have been explored from international and national Scientists. The topics of Thalassemia management, care prevention and gene therapy have been widely discussed during the Conference. 

The social program was designed to provide many opportunities to experience the culture, wonders, sights (Hurgada and Sharm El Sheikh) and ambiance of Egypt. 

This event was memorable and pleasant enriching the minds and hearts of all those who attended.

The Indonesian Thalassaemia Foundation has also organised a celebratory event in honour of the International Thalassaemia Day, 8 May 2015. Below, we share photographs of this event.

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

The website for the 2nd Pan-Asian Conference on Haemoglobinopathies is now available! Click here to visit!

 

The Lighthouse at Chelsea Piers will be sporting a special glow on 4 June as Cooley's Anaemia Foundation (CAF) descends upon the venue to hold its 2015 Gala!

“This year’s Gala looks to be a very special evening,” says Anthony J. Viola, CAF National President. “As always, the Committee has done sterling work, going above and beyond the call of duty to ensure that our guests have a night they will long remember. And in Michael Presto, we have an honoree who represents everything one can wish for: dedication, enthusiasm, and a genuine and deep-felt desire to help the Foundation and, more importantly, the incredible patients we serve”

The annual Gala is highly anticipated by all who regularly attend. They know that they will be treated to a very special evening, and this year will continue in that tradition. The Lighthouse at Chelsea Piers offers a perfect setting, with its generous views of the Hudson River at sunset. It’s a beautiful place to spend time visiting with friends while celebrating the accomplishments of the Foundation and honouring the exceptional work of this year’s honoree, Michael Presto.

This year, participants across UK and beyond put on the UKTS souvenir T-shirt, and brought their family, friends, and pets to the beautiful and scenic Alexandra Palace for the 2nd International Thalassaemia Day Walk . This year, money was raised to help continue the invaluable work the society is doing.

UK Thalassaemia Society is a non-government funded charitable organisation that relies solely on fund raising activities to continue improving the lives of Thalassaemics in the UK and around the world.

See all the pictures of the walk here.


The Thalassaemia Society of Australian set a stall with information at the Monash Medical centre in Clayton. The aim of the stall is to reach out and inform and engage the community about Thalassaemia and sickle cell anemia.

Additionally, the 9th Australasian Gene and Cell Therapy Society (AGCTS) Conference was held at University College, University of Melbourne, Parkville, VIC, Australia on 29th and 30th April and 1st May 2015. The speakers were excellent and the presentations were exciting. The local organising committee put a huge effort and were rewarded by great presentations from local and international guest speakers
There were many topics relevant to Thalassaemias and other associated conditions, but perhaps the one that drew most attention was by Professor Philippe Leboulch providing an Update on Gene Therapy Clinical Trials for the Treatment of beta-haemoglobinopathies. (Institute of Emerging Diseases and Innovative Therapies, Director, INSERM, University of Paris, France).
We will have a further report on the conference shortly, but would at this point like to congratulate the organising committee of the AGCTS, and sincerely value their ongoing interest in Thalassaemia and Sickle Cell treatment. Thalassaemia Australia was a sponsor of the conference.

In India the following activities were held:

1) The International Thalassemia day was observed at Sri Sathya Sai International Centre on May 8th by the Federation of Indian Thalassaemics (FIT) through the organisation of a special event. The Chief Guest was Mrs. Maneka Sanjay Gandhi, Union Minister for Women and Child Development who was present at this special occasion.

Many dancing and singing performances took place including the signing performance by the talented Swati Tuteja and the Bollywood dancing of a group of children, of the ShamakDavar’s institute of Dance. Mr Jyoti Arora (from Delhi )  and Mr Chandan Das (from  Orissa), two brilliant authors were also present at tis occasion to speak about their books- Lemon Girl & The Road Taken. Many performances followed to entairtain the audience.

The event was a big success with doctors, senior sisters, social workers and a great number of people present at the blood banks. The event was attended by more than 500 people.

2) T
halassemia & Sickle Cell Society of India celebrated the day on 10th May 2015. Children enjoyed the occasion and it had a wide media coverage. To watch the TV interview on the Munshi Channel, please click here.

The Ruby Hall Clinic had organized a walkathon for parents and patients along with Committee members of Thalassemia Society of Pune Chapter . The aim of the vent was to create awareness about thalassaemia. A magic and puppet show was held to entertain children in the auditorium. All children were given hats and red T shirts. Educational pamphlets were distributed to the general public.

3) National Thalassemia Welfare Society (NTWS) observed the 21st International Thalassemia Day (ITD) at the Constitution Club of India, Rafi Marg New Delhi on 8th May 2015. Around 250 Thalassemia patients, parents and Thalassemia experts gathered to discuss the problems faced by thalassaemics and to find means to solve those problems. Many health officials were present at this event. Thalassaemia patients also performed during this event and the Hindi version of Florilegium of Thalassemia which was released on 8th May 2015 by Sh Satyender Jain Hon’ble Minister of Health Govt. of NCT Delhi at Constitution Club of India, Rafi Marg, New Delhi.

4) The World Thalassemia Day 2015 was celebrated in Nagpur (Maharashtra) by the Thalassemia Society of Central India.
An academic session was organised followed by a cultural programme which included singing and dancing performed by Thalassemia Major Patients.




5) In order to create awareness about thalassaemia, a poster contest workshop has been conducted by the Gunjan Organisation For Community Development in collaboration with the Students Welfare Office, HPKV, NSS Unit under the aegis of State Institute of Health & Family Welfare, Parimehal. The National Health Mission, in Himachal gave the technical support. Neha Dadwal from the Agriculture college won the best poster prize. Nee Tima from College of Home Science and Nee Rav from College of Agriculture were second and third respectively. Gunjan representatives, NSS Programme officers, statutory officers, PP Raina were among other dignitaries at the event.


6) In Uttar Pradesh an awareness programme was organised.  Free blood transfusion was given to the patients, as well as genetic counselling and free screening services. The event was a major success as many patients and parents have attended.




) In Punjab on 7 May 2015  a voluntary blood donation camp was organised at the Dayanand Medical College and Hospital Ludhiana. At the Christian Medical College Ludhiana a Seminar on Comprehensive Care for Thalassaemics was conducted, entitled from "Way to Well-being". Special emphasis was given on prevention. Furthermore, a voluntary blood donation drive for medical students was organised under the patronage of the Punjab Thalassaemics Welfare Society, where medical students , registrars and faculty donated 300 units of blood.

 

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