Latest news with #ITP
The Guardian
14 hours ago
- Health
- The Guardian
How digital health tools helped a family navigate a rare diagnosis
When Tim and Jeannie Kirkland's son, Oskar, was diagnosed with a rare blood disorder at just two years old, they began a seven-year journey through the Australian health system. Oskar has immune thrombocytopenia (ITP), a condition that causes unusually low platelet counts and can result in severe bruising and bleeding. While the initial prognosis was reassuring – most childhood cases of ITP resolve within weeks – Oskar's condition didn't follow the typical script. 'Weeks passed and he was still getting irregular bruising in soft spots you wouldn't expect to see: under his eyes and on his belly and back,' Jeannie says. Blood tests revealed consistently low platelets, which are essential for blood clotting. Oskar's treatment included regular blood tests – at times daily – as well as steroid courses and, eventually, immunoglobulin therapy when he was flown to Perth after falling and hitting his head. The Kirklands coordinated care across multiple providers and locations, regularly making the seven-hour drive from Kalgoorlie to Perth with Oskar and their three other children for what was often just a 20-minute specialist appointment. Oskar has immune thrombocytopenia (ITP), a condition that causes unusually low platelet counts and can result in severe bruising and bleeding. They juggled hospital stays, test results, different pathology services, prescriptions and follow-ups with multiple specialists, who frequently couldn't access previous test results from other providers and needed Oskar to endure repeat testing. Tim says: 'Doctors love data and so they were always wanting to do more tests on Oskar – they've got a case they're trying to solve.' Tim and Jeannie became concerned about subjecting their little boy to so many tests, some of which were invasive, while also wanting the best possible care for him. This changed when their GP suggested they make use of My Health Record to access Oskar's key health information in one place. They could now better track Oskar's health and were more easily able to show doctors a record of test results to reduce the need to have them done again. Access to My Health Record and, in particular, the test results, gave Oskar's parents the opportunity to review his results and be informed of early warning signs that could be a red flag for changes in his health. This information proved even more useful for Oskar's parents when the family moved from Western Australia to Tasmania in 2023. 'It was a huge benefit to move to Tasmania, find a GP here, and be able to say, 'here's everything that's happened in the last five years',' Tim says. 'It was just really, really great to have all that history and information in one place.' Dr Amandeep Hansra, a GP and the chief clinical adviser (medicine) at the Australian Digital Health Agency, says the system is designed to empower Australians to manage their health. Dr Amandeep Hansra, chief clinical adviser (medicine), consulting with a patient. 'Knowledge is power,' Hansra says. 'Having access to information about your own healthcare helps you be more proactive about it, helps you be more involved and, ultimately, feel more in control.' My Health Record also makes Hansra's work as a GP easier. 'Digital records accelerate the diagnostic process,' she says. 'If I can actually access the information that I need about a particular patient at the point that I'm seeing them, ultimately it's going to lead to better health outcomes.' A new patient from interstate came to see Hansra recently, needing antibiotics for an infection. The patient told Hansra she was allergic to an antibiotic but couldn't remember which one. It was a public holiday, so Hansra couldn't reach the patient's regular GP clinic to find out. Instead, she checked My Health Record and saw that the patient had been hospitalised recently. She could see not just the hospital discharge summary, but the antibiotic listed in the allergies section. My Health Record also gives doctors instant access to a patient's immunisation history, including tetanus, on the Australian Immunisation Register, to which reporting on all vaccinations has been mandatory since 2024. If a patient has come in after cutting themselves at the beach, for example, and can't remember when their last tetanus shot was, a doctor would usually err on the side of caution and give them the shot. 'Now we can go to just one place, My Health Record, look at their immunisation history, and see the list along with other important health information,' Hansra says. More than 24.3 million Australians have a My Health Record. Almost every GP and pharmacy in the country is connected. More medical specialists are registering for My Health Record by the day, as are allied health professionals such as physiotherapists, who are seeing the value in multi-disciplinary teams accessing the same information. Legislation introduced early in 2025 means it will soon be mandatory for pathology and imaging reports to be uploaded to My Health Record by default. With consistent access to this central source of information, patients and health professionals alike can make more informed decisions, reducing unnecessary tests and improving the safety and speed of care. When an unconscious or seriously unwell patient arrives in hospital by ambulance, for example, emergency department medical teams can now check a patient's My Health Record to see, at a glance, their health history, any medications they're on and whether they're allergic to anything. 'It helps take the guesswork out of the assessment they're doing on that patient,' Hansra says. It's also proving invaluable for people with complex health conditions and chronic diseases, who may take multiple medications and see a series of medical specialists and allied health practitioners. 'It really helps having that central point where they can keep that information,' Hansra says. She encourages everyone to take advantage of My Health Record, seeing it as a win-win for patients and health professionals alike. 'Everybody should jump on board, use it, get familiar with it. Having all your health information in one spot makes it so much easier for you and for the healthcare team that supports you.' The my health app makes it easier for people to access key information about their health on their phones. It offers a secure and convenient way for people to view information that they, their healthcare providers or representatives have uploaded to My Health Record. It also provides access to electronic prescriptions and the active script list for those juggling multiple scripts, and has other features, such as the 'Find and book a health service' tool. 'It's the digital front door for health services,' Hansra says. 'They can go into the app and see their key health information, and that allows them to have control over their own health journey.' Oskar turns nine this year and his condition has stabilised. Jeannie says: 'He's just thriving. He's such an amazing little kid.' Tim and Jeannie Kirkland and their four children His dad agrees. 'From the age of two, he's just taken it in his stride,' Tim says. 'From time to time he'll talk about his 'dodgy blood' but he does all the things that a boy his age would do: he plays soccer, rides his bike and this year he's started running. It doesn't limit anything he does but we keep an eye on him and are aware this might be something that's with him for the rest of his life.' Tim is grateful that all four of their kids will have access to their own complete and accurate health record when they grow up and leave the nest. 'It's really great for their future,' Tim says. 'They'll have their whole medical history available to them.' Jeannie, a nurse by training, also likes the reassurance of knowing Oskar's records are accessible when they travel as a family, with the my health app installed on their phones. 'On holidays, we like knowing that no matter where we go, if we need to we can access that history,' she says. 'It's very empowering.' Get started with digital health by downloading the my health app today.
Yahoo
20-06-2025
- Health
- Yahoo
Sobi will showcase extensive research and clinical outcomes at ISTH 2025
STOCKHOLM, June 20, 2025 /PRNewswire/ -- Sobi® (STO: SOBI) will be presenting a wide range of clinical study updates at the annual International Society on Thrombosis and Haemostasis (ISTH) Congress in Washington (21-25 June). With ten (10) presentations, Sobi's clinical teams will showcase new data for avatrombopag to treat children with ITP, surgery outcomes using efanesoctocog alfa, and abstracts on specific long-term haemophilia studies. "Attending ISTH is an important part of our commitment to collaboration and knowledge sharing so we can further advance treatments for those living with haemophilia, immune thrombocytopenia, and other rare blood conditions", said Lydia Abad-Franch, MD, Head of R&D and Medical Affairs, and Chief Medical Officer at Sobi. "We are proud to be showcasing abstracts as part of the ISTH programme, including Doptelet abstracts that present new data related to children living with ITP, Altuvoct outcomes for perioperative management, and joint health outcomes from a long-term extension study, as well as final outcomes from the B-MORE study. Many people living with rare conditions have unmet needs, and we are proud to present additional data advancing treatments for these rare conditions." Data to be presented at ISTH 2025 ALTUVOCT® (efanesoctocog alfa) OC 64.4: Major Surgical Outcomes with Efanesoctocog Alfa: 4 Years' Experience in the XTEND Clinical Program Presenting author: Liane Khoo Oral presentation Session date: Tuesday 24 June Session time: 14:45 - 16:00 EDT Location: 151 A&B, Walter E. Washington CC Convention Center OC 20.5: Treatment of Bleeding Episodes with Efanesoctocog Alfa in Children: XTEND-ed Second Interim Analysis Presenting author: Lynn Malec Oral presentation Session date: Sunday 22 June Session time: 14:45 - 16:00 EDT Location: Ballroom A-C, Walter E. Washington CC Convention Center PB0847: Minor Surgeries Outcomes with Efanesoctocog Alfa: 4 Years' Experience in the XTEND Clinical Program Presenting author: Pratima Chowdary Poster presentation Session date: Monday 23 June Session time: 13:45 – 14:45 EDT Location: Exhibition Hall PB1425: Joint Health Outcomes with Efanesoctocog Alfa in Adults/Adolescents from XTEND-1 Continuing XTEND-ed Presenting author: Christoph Königs Poster presentation Session date: Tuesday 24 June Session time: 13:45 – 14:45 EDT Location: Exhibition Hall General Haemophilia PB0778: Addressing unmet medical needs and health inequities in haemophilia A: expertconsensus statements Presenting author: Cédric Hermans Poster presentation Session date: Monday 23 June Session time: 13:45 – 14:45 EDT Location: Exhibition Hall PB0816: Extravascular distribution of factor IX: evidence and relevance for haemophilia B replacement therapy Presenting author: Cédric Hermans Poster presentation Session date: Monday 23 June Session time: 13:45 – 14:45 EDT Location: Exhibition Hall PB1439: Monitoring Joint Health in Haemophilia Patients in Spain: Updated Analysis of the JOIN-US Project Presenting author: María Teresa Álvarez Román Poster presentation Session date: Tuesday 24 June Session time: 13:45 – 14:45 EDT Location: Exhibition Hall ALPROLIX® (rFIXFc) PB0868: Real-World Effectiveness and Usage of Recombinant Factor IX Fc: Final Data from the B-MORE Study Presenting author: Heidi Glosli Poster presentation Session date: Monday 23 June Session time: 13:45 – 14:45 EDT Location: Exhibition Hall Doptelet® (avatrombopag) PB0348: Consistent Response to Avatrombopag for the Treatment of Children with ITP Across Various Baseline Characteristics Presenting author: Rachael F. Grace Poster presentation Session date: Sunday 22 June Session time: 13:45 - 14:45 EDT Location: Exhibition hall PB0364: Evaluation of Efficacy and Safety of Avatrombopag in Children with ITP Based on Disease Duration Presenting author: Rachael F. Grace Poster presentation Session date: Sunday 22 June Session time: 13:45 - 14:45 EDT Location: Exhibition hall OC 65.3: Real-World Outcomes of Avatrombopag Treatment in Primary ITP Stratified by Prior TPO-RA Exposure Presenting author: Srikanth Nagalla Oral presentation Session date: Tuesday 24 June 2025 Session time: 14:45 – 16:00 EDT (Presentation time currently in programme: 15:15 – 15:30 EDT) All abstracts are accessible through the official ISTH website. However, any late-breaking abstracts will only be made available later. About ALTUVOCT® (efanesoctocog alfa) ALTUVOCT® (efanesoctocog alfa) is indicated for the treatment and prophylaxis of bleeding in patients with haemophilia A. ALTUVOCT can be used for all age groups and any disease severity. About Elocta®/Eloctate® (efmoroctocog alfa) Elocta®/Eloctate® (efmoroctocog alfa) is a treatment and prophylaxis of bleeding in patients with haemophilia A. Elocta/Eloctate can be used for all age groups. About Alprolix® (eftrenonacog alfa) Alprolix® (eftrenonacog alfa) is a treatment and prophylaxis of bleeding in patients with haemophilia B. Alprolix can be used for all age groups. About Doptelet® (avatrombopag) Doptelet® (avatrombopag) is indicated for the treatment of primary chronic immune thrombocytopenia (ITP) in adult patients who are refractory to other treatments, and a treatment of severe thrombocytopenia in adult patients with chronic liver disease (CLD) who are scheduled to undergo an invasive procedure. About Sobi Sobi is a global biopharma company unlocking the potential of breakthrough innovations, transforming everyday life for people living with rare diseases. Sobi has approximately 1,900 employees across Europe, North America, the Middle East, Asia and Australia. In 2024, revenue amounted to SEK 26 billion. Sobi's share (STO:SOBI) is listed on Nasdaq Stockholm. More about Sobi at and LinkedIn. About Sanofi Sanofi is an R&D driven, AI-powered biopharma company committed to improving people's lives and delivering compelling growth. Sanofi apply deep understanding of the immune system to invent medicines and vaccines that treat and protect millions of people around the world, with an innovative pipeline that could benefit millions more. Sanofi's team is guided by one purpose: to chase the miracles of science to improve people's lives; this inspires Sanofi to drive progress and deliver positive impact for Sanofi's people and the communities Sanofi serve, by addressing the most urgent healthcare, environmental, and societal challenges of our time. Sanofi is listed on EURONEXT: SAN and NASDAQ: SNY About the Sanofi and Sobi collaboration Sobi and Sanofi collaborate on the development and commercialisation of Alprolix and Elocta/Eloctate. The companies also collaborate on the development and commercialisation of efanesoctocog alfa, or ALTUVIIIO® in the US, Japan, and Taiwan, and Altuvoct in Europe. Sobi has final development and commercialisation rights in the Sobi territory (essentially Europe, North Africa, Russia, and most Middle Eastern markets). Sanofi has final development and commercialisation rights in North America and all other regions in the world excluding the Sobi territory. Contacts For details on how to contact the Sobi Investor Relations Team, please click here. For Sobi Media contacts, click here. This information was brought to you by Cision The following files are available for download: Sobi will showcase extensive research and clinical outcomes at ISTH 2025 View original content:
Daily Maverick
17-06-2025
- Business
- Daily Maverick
The R440bn private transmission gamble that could finally end load shedding
Government fast-tracks private sector participation in grid infrastructure while the national transmission company prepares for a competitive electricity market by April 2026. South Africa's electricity salvation is called the Independent Transmission Projects (ITP) Programme – a joint venture between Kgosientsho Ramokgopa's Department of Electricity and Energy and Enoch Godongwana's National Treasury – and it's racing the clock to unlock billions in private investment and build the 14,000km of new transmission lines needed to connect renewable energy projects and end the country's electricity crisis. Speaking to the parliamentary committee on electricity and energy last week, Minister of Electricity and Energy Ramokgopa painted a picture of a country on the cusp of an energy revolution, but one that required unprecedented national rewiring coordination between government, the private sector and state-owned entities to succeed. Ramokgopa knows the stakes. It was his Integrated Resource Plan that estimated a desperate need of more than 14,000km of new transmission lines and 170 transformers over the next decade – requiring a minimum of the N1 road length from Joburg to Cape Town's worth of new lines annually – South Africa's current grid expansion pace is 'wholly inadequate', according to government briefings. Private sector rush The appetite for private sector involvement is clear. Between December 2024 and February 2025, the government conducted a request for information that received more than 130 formal responses from local and international developers, financiers, operators and equipment manufacturers. More than 44% of local participants indicated they intended to partner with international entities, suggesting the scale of investment required exceeds domestic capacity alone. The feedback was instructive: the industry reported a need for stable regulatory frameworks and a programmatic roll-out for pipeline predictability, while also flagging permitting, right-of-way acquisition and supply chain constraints as key risks requiring proactive mitigation. The government listened. First came the ministerial determination, gazetted on 28 March 2025, designating the Department of Electricity and Energy as the procurer and the National Transmission Company South Africa (NTCSA) as the buyer under Transmission Services Agreements. The determination defines Phase 1 scope as 1,164km of 400kV transmission lines across the Northern Cape, North-West and Gauteng. Expropriation trump card Next came the Draft Electricity Transmission Regulations, on 3 April, with public consultation closing on 22 May. The IPP Office will run the Phase 1 procurement, with pre-qualification tenders expected by end-July and requests for proposals by November. A persistent obstacle that the NTCSA inherited from Eskom is the complexities of securing land for its transmission lines. Ramokgopa confirmed that expropriation with compensation would be used 'as a final instrument' after exhausting other engagement options. For ITP projects, the government aims for 'late-stage tender' – resolving land acquisition, environmental impact assessments and statutory authorisations before developers take over execution, de-risking projects for private investors. Some discussions have stretched over four years without resolution, but the NTCSA says it is committed to meticulously adhering to proper procedures to mitigate the risk of litigation as it navigates these challenging negotiations. The R440bn funding puzzle The Transmission Development Plan requires R440-billion over the next decade. Ramokgopa was blunt about the funding reality: 'The sovereign balance sheet cannot provide a blanket sovereign guarantee for this investment, nor are Eskom's or NTCSA's balance sheets strong enough alone.' The government's solution is a 'bespoke financing instrument' backed by a Credit Guarantee Vehicle (CGV) developed with the World Bank. The CGV will be incorporated as a private non-life insurance company in South Africa and is expected to become operational in 2026. For the first five years, R155-billion will be spent on transmission infrastructure, with R30-billion expected from third-party debt by 2028. NTCSA's board has increased its five-year budget by about R40-billion to R130-billion, with 76% allocated for network expansion. A R219-billion provision from Budget 3.0 (part of the R1.03-trillion medium-term expenditure framework) was noted for strengthening the electricity supply network, from generation to transmission and distribution. Supply chain nationalism Ramokgopa pointed to the government's intention to build local industries on the back of energy investments rather than 'exporting opportunities'. The Department of Trade, Industry and Competition is coordinating interventions to ensure local production of Class 4 transformers and steel. The progress is evident: 22 factories have been accredited for various transformer classes, while five of six identified steel tower suppliers have been certified. Eskom announced a panel of transformer suppliers in June 2024 to address demand for 101 large transformers over the next decade. Racing against time With the competitive electricity market targeted for April 2026 and the Credit Guarantee Vehicle becoming operational the same year, timelines are tight. The NTCSA is simultaneously developing market codes, managing infrastructure roll-outs and preparing for its role as market operator once the Electricity Regulation Amendment Act is passed. The South African Wholesale Electricity Market School will launch at Wits Business School to build market participant capabilities, while synchronous condensers are planned to strengthen grid stability as renewable penetration increases. That said, for the first time in years, South Africa has a comprehensive plan, committed funding mechanisms and private sector interest to transform its electricity system. Whether it can execute fast enough to meet the 2026 competitive market deadline – and finally end load shedding – remains the R440-billion question. DM
Iraq Business
15-06-2025
- Business
- Iraq Business
Will end to Pipeline Feud revive flow of Iraqi Oil to Israel?
From Amwaj Media. Any opinions expressed are those of the author(s), and do not necessarily reflect the views of Iraq Business News. Deep Dive: Will end to pipeline feud revive flow of Iraqi oil to Israel? After a glimpse of progress, Baghdad's spat with the Kurdistan Regional Government (KRG) over the future of the Iraq-Turkey Pipeline (ITP) is flaring up. While a budget amendment in March raised hopes of a breakthrough and the reopening of the pipeline, which has been closed since an international arbitration ruling in 2023, negotiations have broken down. Amid heated rhetoric, the crisis has led the federal government to cut salary payments to the 1.2M public sector workers on the KRG's payroll. The full article can be viewed here.
Local Spain
07-06-2025
- Business
- Local Spain
Inside Spain: Catalonia backs ban on foreign residents buying homes
Property For Members In this week's Inside Spain we look at how the Catalan Parliament has voted in favour of preventing temporary residents who've lived in the country for under five years from buying homes. Restrictions on foreign property ownership appear to be at the forefront of national and regional political agendas in Spain currently. Most recently, we've had Pedro Sánchez's ruling party push forward with the idea of a new 100 percent tax which would double the property price for non-residents of the EU. But there are those who want to take it one step further and restrict actual foreign residents in Spain from buying homes. The plenary session of the Catalan Parliament on Thursday supported a motion by separatist party the Republican Left (ERC) calling on the government to limit the purchase of temporary residents to "curb speculation." ERC is the party which already tried to get the Spanish Congress to do this, but the proposal was rejected. Now they're attempting to do the same but just in Catalonia, where 45 percent of 25 to 40-year-old residents are foreign born. The legal text specifies that only foreigners who have "permanent residency" - those who have officially resided in Spain for five years - should be able to purchase a property, and that they would to prove this residency period first to the region's housing department before being able to buy. The premise for this is that there has to be limits for property purchases from overseas which aren't for 'habitual and permanent residence'. The initiative received the approval of the Catalan Socialists-Units parliamentary group and ERC, Comuns and CUP, while right-wing parties Junts, PP, Vox and Aliança Catalana rejected it. A similar left-right political divide has been seen on a national level vis-à-vis the 100 percent property tax. At one point, far-right party Vox referred to such proposals as 'xenophobic'. The Catalan Parliament's green-lighted document also stipulates that a supplementary tax could be introduced on the transfer of real estate to non-EU residents, in line with what Spain's ruling Socialists have proposed, although it's unclear if this would be exactly the same. Furthermore, a "differentiated regime" could be established for legal entities from other EU states wishing to acquire a property for commercial use. The Catalan Parliament has also approved a restriction on foreign investment in real estate development if for commercial purposes. Interestingly, what was rejected was a proposal to reduce the Property Transfer Tax (ITP) on the purchase of a first home for residents. Crucially, even though the Catalan Parliament has voted in favour of this motion, it remains a declaration of intent with no immediate effect. In other words, foreigners - regardless of their nationality or residency - can continue to buy properties in Catalonia as this is not a law that's in force. What the motion and vote does require is that Spain's Prime Minister Pedro Sánchez and the Catalan leader, Socialist Salvador Illa, take action to create a 'legal framework' to make these limits on foreign property ownership a reality. Whether this actually occurs will remain to be seen, subject as well to the possibility that such measures may contravene EU legislation on the free movement of capital from within and outside of the bloc. What does seem to be clear is that hardly a week goes by in Spain currently without a new proposal from a political party or a region hard hit by the housing crisis - usually those with large foreign populations as well - suggesting foreigners should be limited from buying Spanish property. As with every war of attrition, it may just be that one side caves in eventually, and that some legislation affecting foreign home ownership in Spain does pass. People doubted the cancellation of the golden visa scheme - which gave Spanish residency to non-EU nationals who bought property worth €500,000 - would ever happen. But after a year of legal rigmarole, the residency scheme for wealthy foreigners did get scrapped. See Also
