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TDT: rare disease has big impact on patients, families and society

Published Sun, 24 Nov 2024 21:08:46 GMT

References1Galanello R, et al. Orphanet J Rare Dis. 2010;5:11.2Taher, Ali T et al. NEJM. 2021;384(8):727-743.3N Li et al. Poster BSH23-OR05 presented at 2023 British Society of Haematology Conference, 23 April 2023.4Jobanputra M, et al. Br J Haematol. 2020;191(5):897-905.5Brousse V, et al. Value in Health. 2019;22:S8516Sankaran VG, Orkin SH. Cold Spring Harb Perspect Med.2013;3:a011643.7EU Policy Recommendations for Thalassaemia and Sickle Cell Disease, TIF, available at: https://thalassaemia.org.cy/positions-policies/position-papers/# Date accessed 25 April 2023.8Musallam KM, et al. Blood. 2012;119(2):364-367.9Shelton E, et al. Journal of Hepatitis 2016;2(1):11.10Cappellini MD, et al. Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT). 4th ed. Thalassaemia International Federation; 2021.11Li, et al. Blood (2022) 140 (Supplement 1): 10869–10870.12Paramore C, et al. Patient. 2021;14(2):197-208.13Udeze, C. et al. Abstract EE58 presented at 2023 ISPOR M...

The EU wants to build tomorrow’s technologies. Will countries pay for it?

Published Sun, 24 Nov 2024 21:08:46 GMT

EU officials are vowing to craft a fund that will ensure the technologies of tomorrow are made in Europe. They just don’t know where the money will come from.The latest battle is playing out over the so-called “EU sovereignty fund,” a proposal European Commission chief Ursula von der Leyen first touted last year but that is now facing headwinds.With citizens battling a cost-of-living crisis and inflation remaining stubbornly high, EU countries aren’t keen to offer up extra money for the scheme, which is aimed at strengthening Europe’s homegrown industrial base and green tech production. And with the EU only a few years removed from its controversial decision to take on massive amounts of joint debt to finance a pandemic recovery fund, the appetite for accumulating more debt is negligible. The situation has put the EU in a bit of a Catch-22. Most countries agree Europe must move fast to keep up with the U.S. and China as they funnel massive amounts of subsidies...

Man shot and killed in Dorchester, police searching for shooter

Published Sun, 24 Nov 2024 21:08:46 GMT

An investigation was ongoing Monday night as police continued their search for the person behind a deadly shooting in Dorchester. Police said a man was shot on Columbia Road Monday afternoon near Devon Street. The man was later taken to a hospital where he died. Hours after the shooting, police asked for the public’s help, asking anyone with information on this shooting to reach out. “It happened in the middle of the day,” said Boston Police Commissioner Michael Cox. “A lot of people are out here in general. So, we’re asking for the public to help us with this.”SKY7-HD was over the scene around 5:30 p.m., where several Boston police cruisers were visible. Roughly 30 minutes later, the investigation appeared to focus around two cars in the area. The cars were taped off and evidence markers could be seen in multiple spots around the scene. Police blocked off a large stretch of Columbia Road for hours, working close to Boston’s Frederick Middle School. Cox...

Minnesota Legislature adjourns after passing $72B budget; Democrats celebrate as GOP hits tax hikes

Published Sun, 24 Nov 2024 21:08:46 GMT

ST. PAUL, Minn. (AP) — The Minnesota Legislature put the final touches on a $72 billion state budget and adjourned for the year Monday night as Democrats celebrated enacting an ambitious agenda that ranged from protecting abortion rights, to providing more resources for education, to legalizing marijuana.The big tax bill of the session, which cleared its final test Sunday evening, included $3 billion in tax cuts, including modest one-time rebates from the state’s $17.5 billion budget surplus. But lawmakers also approved tax increases to provide ongoing funding for long-term initiatives like transportation improvements and a new paid family and medical leave program.Both chambers adjourned around 10 pm., well ahead of the midnight deadline, and are due to reconvene Feb. 12. “The work we’ve done over the last five months will make a generational impact on our state — it will lower costs, improve lives, and cut child poverty,” Democratic Gov. Tim Walz said in a statement.To...

Actor Jeremy Renner wants tax credits for film projects in northern Nevada, but he may have to wait

Published Sun, 24 Nov 2024 21:08:46 GMT

CARSON CITY, Nev. (AP) — Actor Jeremy Renner’s hopes to expand a measure for the film industry to northern Nevada were effectively dashed Monday when the bill’s sponsor said it’s too late to entertain in the current legislative session.A bill moving through the Nevada Legislature would provide $190 million annually in tax credits over at least 20 years aimed at bringing film productions to two sites in southern Nevada, including a $1 billion Sony expansion. Renner, who played the sharp-shooting Hawkeye of the Avengers squad in Marvel’s sprawling movie and television universe, lobbied lawmakers Monday for a third site in northern Nevada that he said could rival film production studios in Atlanta and New Mexico where he shot Avengers and other films.Democratic Sen. Roberta Lange of Las Vegas, the bill sponsor, and Brandon Birtcher, a developer who spearheaded the project said it was too late in the project to add another site. But Lange said a potential amendment cou...

Vehicle stolen after carjacking in Jane and Trethewey area

Published Sun, 24 Nov 2024 21:08:46 GMT

A vehicle has been stolen after a carjacking that allegedly involved a firearm in the Jane Street and Trethewey Drive area on Monday night.CARJACKING:Jane St & Trethewey Dr10:30 p.m.– reports of a carjacking– police o/s– confirmed carjacking– multiple suspects involved, firearm seen– vehicle stolen– ongoing investigation– any info call police 416-808-2222#GO1153348^al— Toronto Police Operations (@TPSOperations) May 23, 2023Police responded to reports of a carjacking and arrived on scene after the vehicle was stolen.Multiple suspects are believed to be involved and a firearm was allegedly seen as the vehicle was taken.An investigation is ongoing and anyone with information is encouraged to contact police.

Jokic leads Denver Nuggets past LeBron’s Lakers 113-111, into their first NBA Finals

Published Sun, 24 Nov 2024 21:08:46 GMT

LOS ANGELES (AP) — Nikola Jokic had 30 points, 14 rebounds and 13 assists, and the Denver Nuggets advanced to the NBA Finals for the first time in team history Monday night, sweeping the Western Conference finals with a 113-111 victory over the Los Angeles Lakers.Jamal Murray scored 25 points for the top-seeded Nuggets, who overcame LeBron James’ 31-point first half and a 15-point halftime deficit with a tenacious finish in Game 4 to earn their first conference title in their 47 NBA seasons.James finished with 40 points, 10 rebounds and nine assists after the highest-scoring postseason half of his career, but even the top scorer in NBA history couldn’t keep the deep, dynamic Nuggets from their sixth consecutive victory overall.James missed two tying shots in the final seconds, with Aaron Gordon appearing to block his shot at the buzzer.Jokic earned his eighth triple-double of the playoffs by the third quarter, breaking Wilt Chamberlain’s 1967 NBA record for triple-doubles in a singl...

Judge dismisses Kari Lake’s final claim in election loss for Arizona governor

Published Sun, 24 Nov 2024 21:08:46 GMT

PHOENIX (AP) — A judge on Monday dismissed the only remaining legal claim in Republican Kari Lake’s challenge of her loss in last year’s race for Arizona governor, affirming the election of Democrat Katie Hobbs. Maricopa County Superior Court Judge Peter A. Thompson said Lake failed to prove her claim that Maricopa County did not verify signatures on mail ballots as required by law.Lake was among the most vocal of last year’s Republican candidates promoting former President Donald Trump’s election lies, which she made the centerpiece of her campaign. She has built a loyal following among Trump supporters and is openly considering a run for the U.S. Senate seat now held by Kyrsten Sinema, an independent and former Democrat. Lake is also often mentioned as a potential vice presidential pick for Trump.While most other election deniers around the country conceded after losing their races in November, Lake did not. She has touted her legal battle in fundraising appeals and speeches...

Dripping Springs ISD to increase school resource officers

Published Sun, 24 Nov 2024 21:08:46 GMT

DRIPPING SPRINGS, Texas (KXAN) - More school resource officers will be coming to Dripping Springs ISD campuses. Monday night, the school board decided to nearly double the district's number of SROs. Dripping Springs ISD $223M bond focuses on district growth According to the agenda item, DSISD currently has four SRO positions. The school board voted to add three more. Dripping Springs ISD portable classrooms costing $1.5M for upcoming school year The district said elementary campuses and the middle school share an SRO. Parent's perspectivesDripping Springs ISD parent Teri Purdy said there's not a day that goes by where safety isn't on her mind. "When we drop off our children, we're leaving our hearts, you know, in those buildings," Purdy said. She has an elementary and middle school student with the district. Currently, their campuses don't have a designated school resource officer because they are sharing one."Making sure that there are enough officers, that they don't have to...

House approves bill capping what Texas consumers would pay for new tool to boost power plants

Published Sun, 24 Nov 2024 21:08:46 GMT

"House approves bill capping what Texas consumers would pay for new tool to boost power plants" was first published by The Texas Tribune, a nonprofit, nonpartisan media organization that informs Texans — and engages with them — about public policy, politics, government and statewide issues.(Texas Tribune) -- Texas House members gave preliminary approval to a major bill Monday that would limit the amount of money electricity customers would have to spend due to performance credits, a new financial tool that is designed to bring more power online from gas- and coal-fueled power plants.Senate Bill 7 would limit the net cost of the new financial mechanism to $1 billion a year. Under the bill, the money would go to companies that operate gas and coal plants, along with those that operate batteries, as an incentive to build more plants or extend the lives of existing ones.Opponents of the credits argue the companies could just pocket the added revenue and not generate more power.State Rep...