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Uncommon but impacting millions: The rare disease paradox

Published Mon, 13 Jan 2025 12:22:59 GMT

References1“What is a rare disease?” EURORDIS, www.eurordis.org/information-support/what-is-a-rare-disease/.2Nguengang Wakap S, Lambert DM, Olry A, et al., “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database,” Eur J Hum Genet, September 2019, www.nature.com/articles/s41431-019-0508-0.3Tambuyzer E, “Rare diseases, orphan drugs and their regulation: questions and misconceptions,” Nature Reviews Drug Discovery, November 2010, pubmed.ncbi.nlm.nih.gov/21060315/.4“Regulation (EC) no 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products,” European Parliament, December 2019, eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:018:0001:0005:en:PDF.5“Orphan Medical Product designation,” European Medicines Agency, 2023, www.ema.europa.eu/en/documents/other/orphan-medicines-figures-2000-2022_en.pdf.6“Expanding research into rare diseases,” Horizon, ec.europa.eu/research-and-innovation/en/horizon-magaz...

Why are we waiting? Green energy chiefs frustrated by UK’s slow response to Biden subsidies

Published Mon, 13 Jan 2025 12:22:59 GMT

LONDON — U.K. green energy chiefs are running out of patience.Almost a year after U.S. President Joe Biden ushered in a mammoth package of green subsidies in the form of last summer’s Inflation Reduction Act (IRA), U.K. clean energy bosses are still waiting for a detailed response from the U.K. government.The mammoth package — the most sweeping climate legislation in recent U.S. history — was signed into law in August and will dish out almost $400 billion in tax credits and other incentives to renewable industries, including solar farms and electric car manufacturers.The EU responded in February with a promise to relax state aid rules and make it easier for renewable developers to access tax breaks, in a bid to help the bloc stay competitive with the U.S. Canada announced a package in March offering C$80 billion in tax credits for clean technologies, arguing that, on green investment, “if Canada does not keep pace, we will be left behind.”But the U.K. is biding its time.“I thi...

3 Camp Pendleton Marines among 4 dead in I-5 crash in LA County

Published Mon, 13 Jan 2025 12:22:59 GMT

Three of the four victims killed in a fiery single-car crash early Saturday morning on Interstate 5 in Downey have been identified as United States Marines stationed at Camp Pendleton.  According to a release from the California Highway Patrol, the single vehicle crash involving a 2018 Dodge Charger happened around 2:30 a.m. on the southbound span of I-5 south of Lakewood Boulevard.  CHP confirmed that the vehicle was on fire when they arrived and that all four occupants of the vehicle were pronounced dead at the scene.  “Preliminary information indicates that the driver lost control of the vehicle at a high rate of speed causing the vehicle to collide with a guardrail and the bridge abutment of the Lemoran Avenue pedestrian overcrossing,” CHP said in a statement. “The force of the impact caused the vehicle to split in two, subsequently ejecting the two rear passengers onto the right shoulder.” The rear end of the car was found approximately 100 feet south of the fron...

Was that actually a tsunami that hit Florida? Yes, but not the kind you think

Published Mon, 13 Jan 2025 12:22:59 GMT

An unexpected culprit toppled beach chairs along the sand at normally calm Clearwater Beach, Florida, last Wednesday. West Coast surfers might snicker at the cause, but the National Weather Service confirms the rare 4-foot (1.2 meter) wave was caused by a kind of tsunami, just not the kind you usually hear about. It was a meteotsunami, a type caused by storms with strong gusting winds, rather than the dramatic tsunamis triggered by earthquakes.WHAT IS A METEOTSUNAMI?According to Paul Close, senior forecaster at the National Weather Service in the Tampa Bay area, when a line of storms tracks over the ocean, there can be 30- to 50-mph (48- 80-kph) winds near the leading edge. The winds push the water, increasing the wave height near the coast before it eventually crashes onto shore. Meteotsunamis only last about an hour because once the leading edge of the storm passes onto land, the action subsides.The meteotsunami was about 2.5 feet (0.8 meters) higher than the forecast wave height ...

Stock market today: Asia mixed after Wall St drifts lower following run-up

Published Mon, 13 Jan 2025 12:22:59 GMT

BEIJING (AP) — Asian stock markets were mixed Tuesday after Wall Street drifted lower following its latest rally.Shanghai and Hong Kong advanced. Tokyo and Seoul declined. Oil prices rose.Wall Street’s benchmark S&P 500 index lost 0.4% on Monday as tech stocks declined following a rapid run-up while most other stocks advanced. The index is off this year’s high of two weeks ago but still up more than 20% since mid-October.“The moderation from previous overbought technical conditions and extreme bullish sentiment continues,” Yeap Jun Rong of IG said in a report.The Shanghai Composite Index gained 0.5% to 3,166.41 while the Nikkei 225 in Tokyo sank 0.8% to 32,453.74. Hong Kong’s Hang Seng rose 1.3% to 19,052.70.The Kospi in Seoul shed 0.2% to 2,575.68 while Sydney’s S&P-ASX 200 added 0.6% to 7,118.20.New Zealand and Bangkok declined while Singapore and Jakarta advanced.Stock prices surged this year on hopes that a recession expected after the Federal Res...

Oilers’ Connor McDavid caps off historic season with third Hart Trophy

Published Mon, 13 Jan 2025 12:22:59 GMT

Edmonton Oilers star Connor McDavid won his third career Hart Trophy at the NHL Awards Monday night after scoring the most points in a season since Mario Lemieux in 1995-96.Connor McHart. pic.twitter.com/49RVLLX6cc— Sportsnet (@Sportsnet) June 27, 2023McDavid beat out finalists Matthew Tkachuk of the Florida Panthers and David Pastrnak of the Boston Bruins with his career-best season. The 26-year-old led the NHL with 64 goals, 89 assists and 153 points while leading the Oilers to a 50-23-9 record.Ben Stelter’s family was on hand to present McDavid with the award.Edmonton’s captain captured 195 of a possible 196 first-place votes, with Pastrnak earning one top-of-the-ballot vote.With Monday night’s result, McDavid becomes only the ninth player to win three or more Hart Trophies, entering into a tie with the likes of Lemieux, Alexander Ovechkin and Bobby Orr for fourth most by a single player.His outstanding season also earned the Richmond Hill, Ont. native the Mauri...

Maestro Muti's Mission: Replenish the 'soul and spirit' with music

Published Mon, 13 Jan 2025 12:22:59 GMT

CHICAGO — Riccardo Muti, the revered Chicago Symphony Orchestra music director, is stepping down after 13 years leading one of the world’s finest ensembles – but he’s not retiring. In fact, next year he’ll be back conducting with the CSO. “I will come back,” Muti said. “Title or no title. What is important for me is to make music with this great orchestra and for the public of Chicago.”But this week does mark the end of an era. Before his farewell concert Tuesday in Millennium Park, he reflected on his remarkable tenure with the CSO. From the moment he walked on stage as the music director of the orchestra, he has been trying to teach audiences about the importance of listening. “This is a sort of mission I am bringing around the world,” Muti said. The legendary conductor said the art of active listening is fading, as we become distracted by our devices, and separated by our smart phones. “People especially of the new generation spend a lot of times watching things and not thinking,...

Community meeting with Bears President and CEO held in Arlington Heights

Published Mon, 13 Jan 2025 12:22:59 GMT

ARLINGTON HEIGHTS, Ill. — The Chicago Bears met with officials in Arlington Heights again on Monday about a possible move.The meeting involved the new Bears president and CEO Kevin Warren and was organized by Touchdown Arlington, a coalition of Arlington Heights business owners who support the Bears' move to town."This is a once-in-a-lifetime proposal that will boost the region's economic engine, create thousands of jobs and generate millions of dollars in future tax revenues for Arlington Heights and the region," the pro-Bears coalition said in a release announcing the meeting.The Bears purchased Arlington International Racecourse and started tearing down the grandstand jockey and office buildings in late May. Exterior demolition of the facilities at Arlington Park began in mid-June. Arlington Park demolition begins But disputes over property tax values have held up prior commitments to build a new stadium on the 326-acre horse racing site that closed for $197.2 million.Ear...

Vote to potentially close Zilker Park overflow parking lot put on hold

Published Mon, 13 Jan 2025 12:22:59 GMT

AUSTIN (KXAN) — One of Zilker Park's largest parking options could close soon, pending decisions from Austin's Parks and Recreation Board and city council. Monday night, the Austin Parks and Recreation Board decided to postpone its decision on closing the Polo Field as a parking option. PREVIOUS: New parking meters, price increase in effect at Zilker Park The parking lot, located between Andrew Zilker Road and Barton Springs Road, is open on weekends during the summer and some Fridays for special events or activities, according to the Austin Parks and Recreation Department. The lot has about 750 spaces — equal to the amount of parking in the gravel lot on Stratford Drive. These are the two largest parking options at Zilker Park. A Barton Springs lifeguard spoke in front of the board on Monday about his concerns with closing the lot. "The nightmare of finding a place to park to go to work is significantly increased on peak days primarily during the charging season. Park staff are...

Texas women's hoops host UConn on Dec. 3 in early season marquee matchup

Published Mon, 13 Jan 2025 12:22:59 GMT

AUSTIN (KXAN) — The mighty UConn Huskies are coming to Austin this season.Part of a home-and-home series after the Texas Longhorns women's basketball team went to Storrs, Connecticut, to play one of the most storied programs in NCAA history, the teams face off Dec. 3 at Moody Center. The game time and broadcast information will be announced at a later date. UConn won last season's matchup 83-76.MORE THAN THE SCORE: Stay up to date on sports stories like these, and sign up for our More than the Score sports newsletter at kxan.com/newslettersTexas Athletics said right now, the only way to guarantee tickets to the marquee matchup is to sign up for season tickets. A huge chunk of last year's roster is returning from the 26-10 squad that won the Big 12 Conference title and made it to the second round of the NCAA tournament. All-American point guard Rori Harmon leads the way, along with guard Shaylee Gonzales and forward DeYona Gaston. Amina Muhammed also returns, and the team added trans...