The Boler-Parseghian Center for Rare and Neglected Diseases (CRND) will be hosting a two-day conference dedicated to raising awareness and understanding of rare diseases starting Friday.According to CRND’s website, the annual conference will feature speeches, forums, interactive stations and other events by a variety of medical and research experts from across the nation. Kasturi Haldar, the director of CRND, said the meeting brings together a convergence of researchers, students, trainees and patients.“There are 7,000 rare and neglected diseases as defined by U.S. federal guidelines, and so what this means is one in 10 people suffer from a rare and neglected disease,” Haldar said. “These diseases are very poorly understood, so there is need to increase awareness, there is need to understand them better and there is a very large unmet need to develop therapies for these diseases.”Because of the large number of rare diseases, the conference is intended to touch on “reasonably broad areas,” Haldar said, such as brain afflictions, blood and lung disorders.“Mechanistically, there’s a huge amount of discovery because [rare diseases] are so under-researched, so it’s a great place for students and trainees who want to understand how a disease is caused but then also for students who are interested in careers in medicine or biology or research in general,” she said.The keynote speakers, Haldar said, are Nicole Boice, the founder and CEO of Global Genes, and Rob Long, a former college football player who survived a rare brain cancer and is now the director of strategic development for Uplifting Athletes.“Really there’s a tremendous sense of hope and excitement,” Haldar said. “We have seen a lot of progress in the development of programs and rare and neglected disease here at Notre Dame, but also nationwide and in the world.”Launched nine years ago as a lunch involving about 20 students, the event has gradually expanded after CRND’s development of an outreach program, Haldar said. By emphasizing the “empowerment of patients” as a major theme for this year’s conference, she said she expects about 170–175 attendees.“There will be a much larger and integrated focus on patient engagement and the activities of our students,” Haldar said. “We’ve created booths, and at these booths, we have students who are partnering with patients to present their disease, so the students will speak on a molecular genetic basis and the patients will speak to the clinical path that they have been down.”Another new addition, Haldar said, is that patients will be introducing each session of the conference.“We’re trying to bring this whole process together, all of the different components that go into supporting and informing rare and neglected diseases research,” Haldar said. “ … The students learn a lot from the patient community, and obviously it’s through the work that the students do that we’re able to support the patients.”According to the conference’s website, patient advocacy groups on campus will also be in attendance. Senior Hannah Mumber, the co-president of RareND, said RareND will give “teaser talks” and presentations on how the club focuses on rare disease awareness and patient advocacy on campus.“The conference allows all sectors of the rare disease community to come together to share experiences and recent research,” Mumber said. “ … I expect the atmosphere to be very collaborative and supportive as always and am most excited to meet the patients and their families.”Junior Megan Crowley, a student who will her share some of her experience of growing up with Pompe disease, will be speaking Saturday after her father, John Crowley, who helped find a cure for Pompe.Editor’s note: Crowley spoke to The Observer with the assistance of her nurse, Emma Holly, who is quoted below.“She’s going to talk about growing up and basically how, through her life, her dad has been helping to try and save her life,” Holly said. “A lot of people view her dad as a hero, but to her it’s just her dad, so she’ll be talking about that.”As it is Crowley’s second year attending the conference, Holly said Crowley hopes more people will attend the conference and that it raises more awareness about rare diseases.“She thinks it is important that people are aware of rare disease day,” Holly said. “ … If there’s enough people getting behind [a rare disease] and supporting it together, then it really makes it less rare [because] there’s more awareness brought to it.”Tags: Megan Crowley, Rare Disease Day Celebration, rare diseases, The Boler-Parseghian Center for Rare and Neglected Diseases
KPK deputy for prevention Pahala Nainggolan said BPJS Kesehatan could cut the cost of cataract operations, which in 2018 came to Rp 2 trillion.“Because there is no guideline on how severe the eye blurring must be, people just went to get the cataract treatment, even when their eyes weren’t that blurry,” Pahala said.He said the government should limit claims for diseases caused by “unhealthy lifestyles”, which he said included diabetes, cancer, strokes and kidney failure. The bill for these diseases in 2018 came to Rp 28 trillion, or around 30 percent of the year’s total claims.The government could save Rp 2.8 trillion by limiting these claims, he said.BJPS Kesehatan should fully enforce the requirement that customers pay 10 percent of the bill, especially for the economically able. This would bring savings of Rp 2.2 trillion from the Rp 22 trillion of individual claims in 2018.A further Rp 6.6 trillion in savings could be made by readjusting hospital classes, Pahala said, noting that 898 out the 7,000 hospitals that partnered with BPJS Kesehatan had been put in the wrong class, leading to customers claiming more money than the actual cost of the services the hospitals had provided.As about 4.5 million people have private health insurance, Pahala said, the government should coordinate with the private health insurers regarding the benefits clients are entitled to. He added that BPJS Kesehatan could allocate up to Rp 600 billion worth of claims every year to private insurers.“BPJS Kesehatan can save Rp 12.2 trillion if it implements our recommendations,” he said, adding that the report had been submitted to the Health Ministry late last year after the appointment of minister Terawan Agus Putranto.Launched in 2014, BPJS Kesehatan now covers about 223 million Indonesians, or 83 percent of the population, with more than 30 million individual customers and around 54 million workers covered by state institutions or private companies.Even before the KPK study, many patients were already feeling the pinch as hospitals cut back services where they could. There were reports of patients being discharged 24 hours after surgery because hospitals had come under pressure from BPJS Kesehatan, which is reportedly scrutinizing all the bills they submit.The KPK study notes that many individual customers, as opposed to those whose premiums are paid by their employers, stopped paying the premium after initial use. This caused Rp 5.6 trillion in premium arrears in 2018.“We support the success of this universal healthcare program. Everyone in Indonesia has to be covered,” Pahala said. (mfp)Topics : Before the ruling, the premium for first-class service had been increased to Rp 160,000 from Rp 80,000, the second class to Rp 110,000 from Rp 51,000 and the third class to Rp 42,000 from Rp 25,000. Premiums approximately doubled across all service tiers.The study of BPJS Kesehatan finances is a manifestation of the KPK’s new approach to fighting corruption: working with state institutions on ways to prevent corruption, rather than catching perpetuators of graft in the act. The KPK has regularly conducted such assessments since its establishment in 2003, but the recent study of BPJS was the first following the enactment of the new KPK law, which removed many of its tools to fight corruption, and the introduction of a new set of commissioners in December.“The government assumed that the premiums weren’t enough, so it raised them,” KPK deputy chairman Nurul Ghufron said recently. “We at the KPK see it differently.”The KPK study says the Health Ministry should enforce all essential medical practice guidelines to help hospitals limit unnecessary treatment. It notes that by June of last year, the ministry had only achieved 32 practice guidelines out of the 80 planned. The heavily indebted national healthcare system received a big blow when the Supreme Court rejected a hefty increase in premiums this month, but the Corruption Eradication Commission (KPK) says the government could cover the deficit by going for greater cost efficiency.The KPK says its study of the finances of the Health Care and Social Security Agency (BPJS Kesehatan), which runs the national health insurance system, shows the agency could save as much Rp 12.2 trillion (US$833 million) by enforcing better insurance claim management.BPJS Kesehatan recorded a Rp 13 trillion deficit last year as premium collection fell short while claims soared. It had begun collecting the higher premiums in January and meeting backpays of Rp 4 trillion owed to hospitals, but it must now refund the money and will likely stop paying hospitals following the court ruling.
Image courtesy of EnagásNatural gas demand in Spain in February closed the month with a 16.9 percent increase year on year, reaching 34.1 TWh, according to the Spanish LNG terminal operator, Enagás.The increase in demand came mostly from the industrial sector as a response to the lower temperatures which also spurred the rise in demand for natural gas used in power generation.Enagás noted that industrial sector, which represents over 50 percent of the total natural gas consumption, used up 17.3 TWh in February, adding that the consumption kept rising since May 2016.Conventional demand, which covers use by homes, businesses and industries, grew 15.5 percent in February compared to the corresponding month in 2016 reaching 29.6 TWh.The increase in electricity demand boosted the demand for natural gas from the power generation sector which saw an increase of 26.9 percent, reaching 4.5 TWh, Enagás said.
RelatedPosts Super Eagles soar on FIFA ranking FIFA ranking: Nigeria moves up by two spots, now world 29th Omeruo welcomes second child Super Eagles’ and Leicester City combative midfielder, Wilfried Ndidi, welcomed a new addition to his family yesterday.Tunde Adelakun, the Manager of Super Eagles Coach, Gernot Rohr, broke the news via his Twitter handle @Tunde_Talks. Adelakun also congratulated the player.He tweeted: “@Ndidi25 doesn’t score many goals. But my boy has scored a big one today.“I used to call him ‘newly married’ now he’s ‘new dzaaddy’.“Congratulations to you on the new arrival. Another major milestone in the life of an amazing young man. Go Wilf.”Ndidi tied the knot in a traditional wedding ceremony with his longtime girlfriend Fortune last year. Ndidi and Fortune, a medical student, have known each other since they were teenagers and have been dating for a couple of years.The couple wedded in a traditional ceremony that was attended by a host of Ndidi’s friends, including his teammate at Leicester Kelechi Iheanacho.Tags: Gernor RohrSuper Eaglestunde adelakunWilfried Ndidi
The 29-year-old has penned a three-year deal at the King Power Stadium and becomes the Foxes’ first signing of the summer. “I’m happy that I’ve signed for Leicester City,” he said. Leicester have signed Austria defender Christian Fuchs on a free transfer after his exit from Schalke. “It was always a goal for me to play in the Premier League, and I’m happy that this dream has come true. “Everybody watches the Premier League. I think it’s the best league in the world. Leicester City is a new experience and new challenge for me.” Fuchs has been capped 66 times by his country and made 99 league appearances for Schalke before moving to England. He made 35 appearances last season, including in the Champions League, and scored three times, one a stunning strike in Schalke’s 4-3 win over Real Madrid in the Bernabeu. Fuchs was also linked with a move to Swansea earlier this year but joins the Foxes after their dramatic escape from Barclays Premier League relegation at the end of the season. Press Association
The University released statistics on the incoming freshman class of 2020 Wednesday. The 16.5 percent admission rate was the lowest in the University’s history and students from all 50 states as well as 75 different countries are going to be represented in the incoming freshman class. The average high school unweighted GPA of the class was 3.84.Design by Katlyn Lee
Get the best of News18 delivered to your inbox – subscribe to News18 Daybreak. Follow News18.com on Twitter, Instagram, Facebook, Telegram, TikTok and on YouTube, and stay in the know with what’s happening in the world around you – in real time. Paris: Denmark and Switzerland secured spots at Euro 2020 at the expense of the Republic of Ireland on Monday as Roberto Mancini’s Italy completed a perfect qualifying campaign by scoring nine.Ireland needed to beat Denmark in Dublin to clinch qualification for next year’s 24-team European Championship finals, but Matt Doherty’s late header was only enough to earn Mick McCarthy’s men a 1-1 draw at the Aviva Stadium. A closely-fought contest, low on technical quality, swung the visitors’ way when the unmarked Martin Braithwaite stuck out a boot to divert a Henrik Dalsgaard cross into the net on 73 minutes.However, Ireland scored a late equaliser to draw 1-1 in Copenhagen in June and they repeated the feat here as Wolverhampton Wanderers right-back Doherty headed in an Enda Stevens cross with five minutes left.Needing to win, the home side then threw everything at their opponents in the dying moments, but Denmark held on to clinch second place in Group D behind Switzerland.”We had opportunities but I am not going to criticise the lads,” McCarthy told Sky Sports.”They have been brilliant. We lost one game out of eight. I am very proud of them. We can beat anyone in the play-offs.”The Danes, European champions in 1992, can now look forward to playing at home during the finals, with Copenhagen one of the 12 host cities chosen for the tournament.Switzerland secured top spot with a 6-1 away win against minnows Gibraltar as Cedric Itten scored twice. Skipper and Arsenal outcast Granit Xhaka netted their final goal.Italy had already wrapped up qualification from Group J but they saved their best for last, making it 10 wins from 10 by hammering Armenia 9-1 in Palermo with seven different scorers.Serie A top scorer Ciro Immobile and Nicolo Zaniolo both scored braces, while Nicolo Barella and Alessio Romagnoli found the net before Chelsea midfielder Jorginho converted a penalty.Riccardo Orsolini came off the bench to score on his Italy debut and Federico Chiesa finished off the scoring after Edgar Babayan had pulled one back for Armenia.It was an 11th straight win in all for Mancini’s side, with Italy scoring nine times in a game for the first time since beating the USA 9-0 at the London Olympics in 1948.”We had the right approach to the game and you don’t score nine goals by chance,” Mancini purred.”We need to improve various aspects of the game but for me it will be really difficult to leave some people at home when I select the squad for the finals. They would all deserve to be there.”Having wrapped up a historic first qualification for a major tournament three days earlier, Finland lost 2-1 to Greece in Athens despite Norwich City striker Teemu Pukki giving them a first-half lead with his 10th goal in eight international games.Bosnia and Herzegovina finish fourth in the group despite a 3-0 win in Liechtenstein, but they will have another chance to qualify via the play-offs next March.- Last game for Spain coach Moreno? -Meanwhile, Group F winners Spain rounded out their qualifying campaign with a 5-0 destruction of Romania at a barely half-full Metropolitano Stadium in Madrid.Gerard Moreno scored twice after Napoli midfielder Fabian Ruiz opened the scoring. Adrian Rus put through his own net in first-half stoppage time and Real Sociedad striker Mikel Oyarzabal wrapped up the win amid reports the match was Robert Moreno’s last as coach.Having already qualified as runners-up in the same group, Sweden defeated the Faroe Islands 3-0, while Norway, who go into the play-offs, won 2-1 in Malta.The final automatic qualifying berth will be decided on Tuesday as Wales host Hungary with the winner going through from Group E, while a draw in Cardiff could allow Slovakia to pip both of them by beating Azerbaijan. denmarkEuro 2020Euro 2020 qualifierEuro 2020 qualifier results First Published: November 19, 2019, 11:54 AM IST