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Uncommon but affecting millions: the rare disease paradox

Published Thu, 26 Dec 2024 19:33:07 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...

Wagner and Russia are here to stay in Africa, says Kremlin’s top diplomat

Published Thu, 26 Dec 2024 19:33:07 GMT

PARIS — Russia’s Foreign Minister Sergey Lavrov has vowed Wagner Group’s operations in Mali and the Central African Republic “will continue” despite the failed rebellion led by Yevgeny Prigozhin, leader of the mercenaries, against Russian President Vladimir Putin. The paramilitary group has expanded its reach across Latin America, the Middle East and Africa in recent years and is seen by Western governments as Russia’s armed foreign policy apparatus. Prigozhin’s mutiny raised questions about the future of its overseas operations.Prigozhin led an uprising against Putin’s army beginning Friday night, first seizing the major southern city of Rostov-on-Don and sending his mercenary forces on a march to Moscow before abruptly standing down his men Saturday night. In Africa, where the group exercises influence in the Central African Republic, Mali and Burkina Faso, Wagner offers its services and help to prop up anti-Western governments in exchange for access to natural resource...

Jordan Westburg records first MLB hit in debut as Orioles top Reds, 10-3, in rain-delayed game

Published Thu, 26 Dec 2024 19:33:07 GMT

Brandon Hyde said he doesn’t have words of wisdom for young players making their major league debuts.Instead, the Orioles manager wants to be “relaxed,” hoping that energy rubs off on the player achieving a lifelong goal.Either that strategy worked Monday, or Jordan Westburg, who brings a consistent and even-keeled reputation to Baltimore along with his talent as a top 100 prospect, didn’t need to be calmed down, as the 24-year-old looked plenty relaxed in his debut Monday.Westburg did a little bit of everything to help lead the Orioles to a 10-3 victory over the Cincinnati Reds in a game twice delayed because of rain.After a loud ovation and a “Westy” chant, he walked in his first plate appearance to spark a two-out rally. He drove in his first run on a ground out in his second at-bat. In his third, he recorded his first MLB hit — a bloop single to left field. On the bases, he was caught stealing, and in the field, he made the defensive pla...

Lexington’s Will Smith one of the jewels in NHL draft

Published Thu, 26 Dec 2024 19:33:07 GMT

When speaking of Will Smith, some of the people who have watched the Lexington native over the years offer lofty comparisons.One chief amateur scout liked him to Patrick Kane. A coach of Smith’s compared him to a younger American star, Jack Hughes.Whether Smith can make the long trek from being just “a Patrick Kane-type player” to the next Patrick Kane remains to be seen. But most NHL prognosticators and talent evaluators believe some team will bet some valuable draft capital that the Boston College-bound forward will become the latter.Reached last week, Smith’s excitement level was starting to build.“I’ve been waiting for this my whole life,” said Smith. “I’m getting kind of anxious.”Wherever he gets taken – many believe he’ll go no lower than No. 4 overall to San Jose and Boston-born GM Mike Grier, though Russian forward Matvei Michkov is a wild card – Smith won’t have to wait long to hear his name at Nashville’s Bridgestone Arena on Wedne...

Japan to reinstate South Korea as preferred trade nation from July 21 as two sides improve ties

Published Thu, 26 Dec 2024 19:33:07 GMT

TOKYO (AP) — Japan announced a decision Tuesday to reinstate South Korea as a preferred nation with fast-track trade status starting July 21, virtually ending a four-year economic row that was further strained during their bitter historic disputes. Trade Minister Yasutoshi Nishimura told reporters that Japan and South Korea have also agreed to set up a framework to review and follow up on the systems as needed. Japan and South Korea have been rapidly mending their ties as they deepen three-way security cooperation with Washington in response to growing regional threats from North Korea and China.A reinstatement of South Korea’s preferential status next month would end a four-year trade dispute that began in July 2019 when Japan removed South Korea from its “white list” of countries given fast-track approvals in trade as ties deteriorated over compensation for Japanese wartime actions.Japan’s tightening of trade controls against Seoul was an apparent retaliation for South Korea...

Russia drops charges against Prigozhin and others who took part in brief rebellion

Published Thu, 26 Dec 2024 19:33:07 GMT

Russian authorities said Tuesday they have closed a criminal investigation into the armed rebellion led by mercenary chief Yevgeny Prigozhin, with no charges against him or any of the other participants.The Federal Security Service, or FSB, said its investigation found that those involved in the mutiny “ceased activities directed at committing the crime.”Over the weekend, the Kremlin pledged not to prosecute Prigozhin and his fighters after he stopped the revolt on Saturday, even though President Vladimir Putin had branded them as traitors.The charge of mounting an armed mutiny carries a punishment of up to 20 years in prison. Prigozhin escaping prosecution poses a stark contrast to how the Kremlin has been treating those staging anti-government protests.Many opposition figures in Russia have received length prison terms and are serving time in penal colonies notorious for harsh conditions.The whereabouts of Prigozhin remained a mystery Tuesday, The Kremlin has said Prigozhin would ...

US ambassador dismisses claims of American interference in Thailand’s elections

Published Thu, 26 Dec 2024 19:33:07 GMT

BANGKOK (AP) — The U.S. ambassador to Thailand dismissed claims of American interference in recent elections as a “disservice” to the Thai people, saying Tuesday that Washington does not support any individual candidate or political party. Claims of the U.S. meddling in the May 14 vote have swirled since the opposition Move Forward Party emerged as the top vote getter and another opposition party came in second, raising the possibility of a new coalition government that could take power from Prime Minister Prayuth Chan-ocha.The Move Forward Party is seen as nominally more pro-American than Prayuth, a former general who initially came to power in a military coup nine years ago, and the claims of American interference in the election are widely seen as originating from supporters of the current status quo. A small group of protesters even demonstrated in front of the U.S. Embassy in April, accusing Washington of interfering in Thailand political affairs. At a roundtable with doz...

German police search church properties in probe of Cologne archbishop over perjury allegations

Published Thu, 26 Dec 2024 19:33:07 GMT

BERLIN (AP) — German police and prosecutors are searching Catholic Church properties in connection with a probe of the archbishop of Cologne over perjury allegations, authorities said Tuesday.Investigators also searched the premises of an IT company that provides email services to the archdiocese headed by Cardinal Rainer Maria Woelki.The archbishop is under investigation on suspicion of having falsely testified to court about when he became aware of reports of clergy sexual abuse in the archdiocese.Woelki has denied the allegations, which have fueled anger among Catholics toward the church.The Associated Press

Stock market today: Global stocks higher Wall St drifts lower following run-up

Published Thu, 26 Dec 2024 19:33:07 GMT

BEIJING (AP) — Global stock markets were mostly higher Tuesday after Wall Street drifted lower following its latest rally.London, Shanghai, Paris and Hong Kong gained. Tokyo declined. Wall Street futures rebounded. 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.In early trading, the FTSE in London rose 0.2% to 7,471.46 while the DAX in Frankfurt lost 0.1% to 15,813.06. The CAC 40 in Paris advanced 0.3% to 7,184.35.On Wall Street, futures for the S&P 500 and the Dow Jones Industrial Average were 0.2% higher.On Monday, the Dow lost less than 0.1%. The Nasdaq composite, dominated by tech stocks, fell 1.2%.In Asia, Shanghai Co...

Canada prepares to adapte to climate change: A look at what’s In The News today

Published Thu, 26 Dec 2024 19:33:07 GMT

Here is a roundup of stories from The Canadian Press designed to bring you up to speed on what you need to know today. Canada’s climate adaptation strategyCanada’s plan to make communities more resilient to climate change is coming today.The final version of the national adaptation strategy is expected to be similar to the draft published last fall, which included targets to shore up resistance to wildfires, extreme heat and major storms, such as hurricanes.That includes measures to protect people from extreme heat, updated flood maps for high-risk areas and public education about the specific risks people might face in their own communities.The federal government consulted with provinces and territories over the past seven months to get their buy-in to the plan, which will need all levels of government to work together.Dental dollars divvied upProvinces that already cover dental-care services for children have been given a smaller share of federal dollars from the Canad...