Home » International Thalassaemia Day » International Thalassaemia Day 2019 – Get inspired, get involved!

International Thalassaemia Day 2019 – Get inspired, get involved!

 

The International Thalassaemia Day, celebrated annually on the 8th of May, is a commemoration day in honour of all patients with thalassaemia and their parents who have never lost hope for life, despite the burden of their disease, and to all scientists who, with tireless dedication and enduring efforts, are striving to ensure an improved quality of life to people with thalassaemia across the world.

As every year, TIF organizes 3 online competitions (a video challenge, a photography contest, and a story challenge), inviting the global thalassaemia community to submit videos, stories and photographs (or collages), with regard to a certain theme.

TIF’s President Message TIF’s BOD Member Mr. Anton Skafi message Cypriot Minister of Health messageGreek Minister of Health messageEMA Executive Director messageInternational Organizations messages

 

The theme for ITD2019 is:

  Universal access to quality thalassaemia healthcare services: Building bridges with and for patients

Join us in #ITD2019 and participate in several awareness-raising and informative activities!

 

 

ITD 2019_Press Release_EN

What are we asking from you?

Despite the progress that has been attained in over the past decades, millions of people still lack physical or financial access to free-of-charge public healthcare services. The significance of this prominent issue has been emphatically underlined in the United Nations (UN) Sustainable Development Goals, according to which countries all over the world need to achieve universal health coverage and improve access to healthcare by 2030.

Universal and improved access to quality, safe and sufficient healthcare services is also one of the most essential challenges for patients affected by thalassaemia. Expanding the range of the healthcare coverage available to individuals and populations with the disease, as well as the numbers of people who can benefit from such coverage, and ameliorating the affordability and provided quality of healthcare services for thalassaemia, represent some challenging tasks that need to be effectively tackled with and for patients, no matter where they are in the world.

 

Did you know that about 100 million people are pushed into extreme poverty each year because of out-of-pocket spending on health?

Source : https://www.who.int/campaigns/world-health-day/world-health-day-2019/key-messages 

You are the ones who witness the reality of thalassaemia in your country first-hand!

Each and every one of you is part of the #ThalassamiaSuperheroes family, a #RealLifeHero struggling daily to cope with the hardship of your disease.

We believe that universal health coverage must be patient-centered, and patients’ organizations and groups are in a key position to suggest what patient involvement entails in this regard and to determine its extent.

We are thus asking you to tell us about the progress that you think your country has made in terms of accessibility to thalassaemia healthcare services and the challenges and patient needs that you think are still present and need to be addressed in order for patients to have a long, good-quality life.

 

Share your thoughts and experiences through videos, stories, or show them to us through one or more pictures!

Join our ITD2019 contests

Media Toolkit for #ITD2019 available for download!

Let us use this day to make a massive call for the provision of equitable, affordable, easily accessible and quality universal health coverage for all patients with thalassaemia!

Let’s fill this day with truly educational and rewarding experiences for all!

 

ITD2019 Media Toolkit

#ITD2019 #ThalassaemiaSuperheroes #RealLifeHeroes

#VideoChallenge #PhotographyContest #StoryChallenge 

 

Important information

 

Instructions and criteria for participants:

  1. Submission (video, photograph, story) should be consistent with this year’s theme, “Universal access to quality thalassaemia healthcare services: Building bridges with and for patients”.
  2. Participants should be thalassaemia patients, thalassaemia treating physicians or parents or individuals with a special interest in and/or involvement with thalassaemia.
  3. Limitations on the entries’ size, length or format are indicated in the submission form. It is preferable to keep the submissions brief, concise and to the point.

 Important Dates: 

Deadline for submission to TIF’s contests: 7 May 2019.

Deadline for submission of plans/ awareness campaigns: 8 May 2019.

ALL RELEVANT INFORMATION AS REQUIRED IN THE SUBMISSION FORM SHOULD BE INCLUDED. ALL LATE OR WITH INCOMPLETE INFORMATION ENTRIES WILL BE EXCLUDED.

 

Evaluation and prizes: 

The videos, photographs and stories will be evaluated by an international review team that will be assigned ad hoc by the Thalassaemia International Federation based on participation.

The first winner will be awarded the prize of $ 500, the second the amount of $ 300 and the third the amount of $ 100.

 Upon finalization of the competition, the winning photograph, story and/or video will be used in TIF’s promotional material e.g. website, TIF online gallery, monthly newsletters. By participating in this contest, you consent to this outcome (distribution).

Full Terms & Conditions
When and how was the International Thalassaemia Day established?More about thalassaemia

 

This is how this year’s voting results were shaped:

  • Universal access to quality thalassaemia healthcare services: Building bridges with and for patients (Winning theme, 196 votes)
  • Patients’ voice at the frontline: Advocating for a better future in thalassaemia care and management (112 votes)
  • The globalization of thalassaemia – Common challenges and opportunities in science and society (67 votes)

Cypriot Government commits to provide full support for the implementation of the National Thalassaemia Strategy

 

The present and the future of thalassaemia management were discussed on Thursday, June 6, 2019, by the President of the Cypriot Republic Mr. Nikos Anastasiades, and Mr. Panos Englezos,the President of the National Thalassaemia Committee, in the presence of Cypriot Minister of Health, Mr. Constantinos Ioannou and several members of the Committee.

In the framework of the meeting, Mr. Anastasiades, having accepted the warm thanks of the Commission for the political decisions he made in relation to the improvement of the services provided to Cypriot patients with thalassemia, during his first and current governance, received from the Commission a preliminary Draft of the National Thalassemia Strategy. Its implementation is imperative given the dramatic scientific developments that have occurred on the thalassaemia field, and the significant diversification of the needs of today’s patients.

 

Read the full Press Release

We are thrilled to present our ‎Photo, Story & Video Challenge Competition winners for the International Thalassaemia Day 2019!

We are thrilled and honoured to have received so many inspiring submissions that blew us away! Each one of them 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 every single day.

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

Photos:                                                                                              Stories:                                                                          

1st place: Amitava Chandra, India                                                1st place: Linda Brown, USA

2nd place: Sourav Karmakar, India                                              2nd place: Diana Abou Hamia, Lebanon

3rd place: Sana Atiq, Pakistan                                                       3rd place: Bidhan Sarkar, Bangladesh

   

Videos:

1st place: Fadel Nooriandi, Indonesia

2nd place: Monica Rockwell, USA

3rd place: Navdeep Singh, USA