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The new Rare Diseases Campaign 2022 seeks to help hundreds in need

The new Rare Diseases Campaign 2022 seeks to help hundreds in need
Feb 1 2022 Share

The National Alliance for Rare Diseases Support Malta has just launched the 2022 nationwide Rare Diseases Campaign. With the launch held at the Parliament Foyer under the auspices of the Speaker of House Dr Angelo Farrugia, President of the National Alliance Michelle Muscat explained what the campaign will entail. 

She called on for local policy makers to support the Alliance’s call for a National Action plan on rare diseases based on the European Action Plan that is currently being advocated for by EURORDIS, of which the Alliance  is an active member. There are three main goals this campaign seeks to work on – ensuring that people stop losing their lives too young from rare diseases; to improve the quality of life of people living with a rare disease and; to ensure that both Europe and Malta as its member leads in rare disease innovation.

In Malta, it is estimated that there are 27,000 individuals living with a rare disease. The Malta National Register for Rare Diseases lists approx 4k patients suffering from a rare disease. However, it is estimated that there are approx 27,000 people suffering from a rare disease/condition.As per EU statistics, 30 million EU citizens currently live with a rare disease. 6,000 are diagnosed with rare diseases and 1 in 2,000 get a rare disease. 

The Alliance will be advocating for more awareness about rare diseases through a month long campaign starting with a week long initiative ‘Rare in the City’ held under the auspices of The Speaker of The House.As there is no current overreaching strategy for rare diseases both at a local and European level, care and research experts across Europe must collaborate for the best possible treatments. 

Michelle Muscat said that National and European policy makers should recognise the complexity of these issues and the importance of a ‘one health’ approach with measurable goals and strategic plans that are aligned with the UN Sustainable Development Goals.She also said that it was an honour for the National Alliance for Rare Diseases Support Malta to be part of the ECOSOC Committee on Rare Diseases which pushed forward the UN Resolution which was adopted inD member 2021 by the United General Assembly. 

The National Alliance for Rare Diseases Support Malta will continue to ensure that its members will have a voice in our society and across the world and to make sure that the United Nations sustainability goals are fulfilled. Michelle Muscat went on to thank all the different stakeholders that form the Alliance including researchers, geneticists, genetic councillors, health professionals and the patients and their family/carers. 

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Two Mosta streets named after Victor Calvagna and Mons. Joseph Carabott

Two Mosta streets named after Victor Calvagna and Mons. Joseph Carabott
Feb 1 2022 Share

Minority Leader in Mosta’s Local Council Keith Cassar took to Facebook to announce that in their last council meeting on Tuesday of last week, two streets in the locality will be named after two late beloved men.

Triq il-Bufula l-Ħamra will be named Triq Dr. Victor Calvagna and Triq Stivala will be named Triq Mons. Joseph Carabott in recognition of the two men’s hard work in the community. The decision was unanimously approved. 

The proposals were put forth by Mayor Romilda B. Żarb and Cassar himself. 

Carabott was a beloved priest who was ordained in 1962, going on to work extensively in the community, earning the respect and love of many locals.

Calvagna was the founder of Puttinu Cares and one of the leading paediatric oncologists who helped hundreds of kids and families suffering from serious illnesses. 

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Photo Source: Keith Cassar FB

Viral game Wordle sold for seven figures to The New York Times

Viral game Wordle sold for seven figures to The New York Times
Feb 1 2022 Share

The latest game to go viral, ‘Wordle’ has just been sold to the New York Times for what it claims to be ‘low seven figures.’ The game’s creator, a British engineer named Josh Wardle, developed the game for his girlfriend before launching it to the general public in October. 

The publication is said to have purchased the game to attract more subscribers, but this has caused people to question whether the game will remain free. However, New York Times said that at the time it moves to the publication, ‘Wordle’ will be free to play for new and existing players, and no changes will be made to its gameplay.’

Wardle himself posted a Twitter statement, saying that it has been incredible to watch a game bring so much joy to so many. ‘On the flip side, I’d be lying if I said this hasn’t been a little overwhelming. After all, I’m just one person and it is important to me that, as Wordle grows, it continues to provide a great experience to everyone.’ 

He said that when the game moves to the NYT site, he will be making sure that everyone’s wins and streaks will be preserved. Speaking about the deal, general manager for NYT Games Jonathan Knight said that the game has done what so few games have done; it has captured our collective imagination and brought us all a little closer together. 

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Malta Carnival 2022 programme revealed by Festivals Malta

Malta Carnival 2022 programme revealed by Festivals Malta
Feb 1 2022 Share

Festivals Malta have just announced that ‘Il-Karnival ta’ Malta’ will once more be held through an abridged programme between the 25th February and 1st of March 2022. Il-Karnival ta’ Malta Artistic Director Jason Busuttil explained that this year’s programme will include various competitive installations throughout all the streets of the capital city Valletta. 

This will take place between the aforementioned dates, and include everything from a photographic exhibition by German photographer Frank Kirchner and curated by Antoine Farrugia and a costumes exhibition featuring works from the past years. A live production of il-Qarċilla, in collaboration with Spazju Kreattiv will also take place, accompanied by a live theatrical show which includes dance, projections and other activities suitable for children by the Manoel Theatre in collaboration with TOI TOI collective. 

In a statement, Minister for National Heritage, the Arts and Local Government José Herrera said that carnival ‘is one of the main pillars of Malta’s cultural calendar. One cannot help but feel the absence of Carnival festivities and the talent it inspires through the enthusiasts who dedicate most of their lives for its preparation.’The Minister highlighted how throughout the pandemic, the government had to make responsible decisions and to carefully organise various initiatives which add value to the Maltese cultural calendar. 

‘However, we know that what has been organised can never compare to the traditional carnival that is celebrated by thousands of Maltese citizens as well as tourists who visit our islands especially for this event. Given that, as announced a few days ago, the current COVID-19 measures will be revised, the government together with Festivals Malta will organise a carnivalesque programme that for this year only, will be held on the 20th, 21st and 22nd of May. Through this initiative the Carnival community can safely enjoy these highly anticipated festivities.’ 

Festivals Malta CEO Annabelle Stivala also spoke, saying that Malta’s carnival is an important event in Malta’s cultural calendar and Festivals Malta has been constantly striving to return carnival celebrations back to their former glory. “Throughout the years, Festivals Malta has made it its mission to preserve the traditions and customs associated with Maltese Carnival, while also elevating it as a quality festival. While the festival’s format had to be adapted due to the current situation, Festivals Malta has endeavoured to keep the carnival spirit alive despite the challenges brought on by the pandemic”, concluded, Ms Stivala.

More details can be found here.

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Photo Source: Darren Agius, Traditional Sweet Recipes From Malta

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