๐ ๐ต๐น ๐ฑ๐๐๐ ๐ฎ๐ด | ๐ฐ๐๐๐๐๐๐๐๐๐๐๐๐ ๐ต๐๐๐๐๐๐๐ ๐บ๐๐๐๐๐๐๐๐ ๐ซ๐๐:ย ๐จ๐ท๐ซ๐ฐ๐ท ๐๐๐๐๐๐๐๐ ๐๐๐๐๐๐๐๐ ๐๐๐ ๐บ๐ช๐ฐ๐ซ ๐๐๐๐๐๐๐๐๐ ๐๐ ๐๐๐๐๐๐๐๐ ๐๐๐๐ ๐๐๐๐๐ ๐๐๐๐ ๐๐ ๐ท๐๐๐๐๐๐๐ On the occasion of the ๐๐ป๐๐ฒ๐ฟ๐ป๐ฎ๐๐ถ๐ผ๐ป๐ฎ๐น ๐ก๐ฒ๐ผ๐ป๐ฎ๐๐ฎ๐น ๐ฆ๐ฐ๐ฟ๐ฒ๐ฒ๐ป๐ถ๐ป๐ด ๐๐ฎ๐, the Portuguese Association of Patients with Primary Immunodeficiencies (APDIP) has launched a public petition for the inclusion of Severe Combined Immunodeficiency (SCID) in the neonatal screening to be carried out for all newborns in Portugal through the heel prick test. ๐ด๐๐๐๐๐๐๐๐ ๐ก๐ ๐กโ๐ '๐ ๐๐๐ ๐ต๐๐๐๐๐๐ก๐๐' ๐ ๐ข๐๐ฃ๐๐ฆ ๐๐๐๐๐๐๐ ๐๐ข๐ก ๐๐ 2023 ๐๐ฆ ๐กโ๐ ๐ธ๐ข๐๐๐๐๐๐ ๐๐๐๐๐๐๐ง๐๐ก๐๐๐ ๐๐๐ ๐ ๐๐๐ ๐ท๐๐ ๐๐๐ ๐๐ (๐ธ๐๐ ๐๐ ๐ท๐ผ๐) ๐๐๐๐๐ ๐๐๐๐ ๐กโ๐๐ 5,000 ๐๐๐๐๐๐ ๐ค๐๐กโ ๐๐๐๐ ๐๐๐ ๐๐๐ ๐๐ ๐๐๐ ๐กโ๐๐๐ ๐๐๐๐๐๐๐๐ , 50% ๐๐ ๐๐๐ ๐๐๐๐๐๐๐ก๐ ๐๐๐ฃ๐๐๐๐๐ ๐กโ๐๐ก ๐กโ๐๐ฆ ๐๐๐๐๐๐ฆ ๐๐๐๐๐๐ ๐ค๐๐กโ ๐กโ๐ ๐๐๐ ๐ ๐๐๐๐๐๐ก๐ฆ ๐๐ ๐ก๐๐๐๐๐๐๐ ๐กโ๐ ๐๐๐ ๐๐๐ ๐ ๐๐ก ๐๐๐๐กโ. ๐โ๐ ๐๐๐๐ข๐๐ ๐๐ ๐๐ฃ๐๐ โ๐๐โ๐๐ ๐๐๐ ๐๐๐๐๐๐ก๐ ๐๐ ๐โ๐๐๐๐๐๐ ๐๐๐ฃ๐๐๐ ๐ค๐๐กโ ๐๐๐๐ ๐๐๐ ๐๐๐ ๐๐ , ๐ค๐๐กโ 82% ๐ ๐๐ฆ๐๐๐ ๐กโ๐๐ฆ ๐ค๐๐ข๐๐ ๐๐๐๐ ๐กโ๐๐๐ ๐โ๐๐๐ ๐ก๐ โ๐๐ฃ๐ ๐๐๐๐ ๐๐๐๐๐๐๐ ๐๐ ๐๐ก ๐๐๐๐กโ.* SCID screening is already a reality in many countries. With current technology, integrating this test into other standard neonatal screenings is feasible and promises to transform lives. ๐ As Kedrion, we share the commitment of APDIP in underscoring the critical role of early diagnosis for managing and treating serious Immunodeficiencies. IPOPI - International Patient Organisation for Primary Immunodeficiencies APDIP - Associaรงรฃo Portuguesa de Doentes com Imunodeficiรชncias Primรกrias Ricardo ๐ Pereira #InternationalNeonatalScreeningDay #INSD #NeonatalScreening #PrimaryImmunodeficiencies #NeonatalHealth #RareDiseases #NeonatalScreeningMatters ย *"๐๐ข๐ณ๐ฆ ๐๐ข๐ณ๐ฐ๐ฎ๐ฆ๐ต๐ฆ๐ณ" ๐ด๐ถ๐ณ๐ท๐ฆ๐บ ๐ฃ๐บ EURORDIS-Rare Diseases Europeย https://lnkd.in/dRd5eD88
Kedrion Biopharmaโs Post
More Relevant Posts
-
Invasive Group B Strep (#iGBS) in early infancy associated with higher risk of neurodevelopmental impairment in later life Children with a history of invasive Group B Streptococcus (#GBS) disease face a higher risk of moderate to severe neurodevelopmental impairment (#NDI) later in life compared to non-iGBS children, according to a new study published inย The Lancet eClinicalMedicine. Risk of moderate/severe NDI among #iGBS survivors varied by location: 2.9% in India, 3.4% in Kenya, 7.7% in Mozambique, 13.9% in South Africa and 23.1% in Argentina. Frequency of mild neurodevelopmental impairment also varied between the countries included in the study, ranging from 18% in Mozambique to 61% in Argentina. The study highlights the need for freely available standardised developmental assessment tests that can be adapted to context for routine use in both clinical practice and to inform public health policy. Better #detection of #iGBS is also needed to link to better healthcare and education for affected children and comprehensive support for their families, requiring context-specific implementation research. https://lnkd.in/gBcaxUwm
To view or add a comment, sign in
-
๐ We recently hosted the Biofire Connect events in Chennai and New Delhi, bringing together an incredible community of clinicians from various fields like Critical care, ID, pediatrics and microbiologists. These gatherings provided a unique platform for sharing experience, insights, and discussing the benefits and caveats of Syndromic multiplex PCR testing solution by BioFire, empowering everyone in the fight against infectious diseases. ๐ฌ Our expert speakers delivered impactful sessions on the latest advancements in rapid diagnostics, showcasing the power of Biofire in clinical settings. Specifically curated talks addressed key topics in infectious disease management, emphasizing the critical role of accurate and timely diagnostics. ๐ฌ The interactive discussions left everyone inspired and equipped with new knowledge to enhance patient care. ๐ A huge thank you to all the eminent speakers, participants and organizers for making these events a resounding success. Together, we're making strides in improving healthcare and tackling infectious diseases head-on. ๐ Stay tuned for more updates and upcoming events as we continue to connect and collaborate for a healthier future! #BiofireConnect #HealthcareInnovation #InfectiousDiseases #RapidDiagnostics #Collaboration #PatientCare #HealthcareCommunity #patientsafety
To view or add a comment, sign in
-
Today is International Neonatal Screening Day. Newborn screening is critical for the early detection of many genetic diseases, providing accurate diagnoses and ensuring rapid referrals within the first few weeks of life. For patients with Krabbe disease, newborn screening is essential. It significantly reduces the time to access vital treatments, which is crucial for their health outcomes. Thanks to the advocacy efforts of patient families and organizations, more states now include Krabbe disease on their newborn screening panels or have RUSP (recommended uniform screening panel) alignment legislation. Learn more about the importance of neonatal screening here โก๏ธ https://hubs.li/Q02DHcfM0
To view or add a comment, sign in
-
The 10-fold rise in congenital syphilis cases in the U.S. is surprising to many. However, this has been a global issue for many years. Winnie Fung and I published a study in the Journal of Health Economics in 2016 showing that state-mandated antenatal testing for syphilis, when first enacted, decreased neonatal mortality rates of nonwhites* by 8.6% and narrowed the white-nonwhite* neonatal mortality gap 18% by 1947. Unfortunately it appears that nearly 90% of cases in 2022 could have been prevented with timely testing and treatment. #healthpolicy JHE Publication can be found here: https://lnkd.in/eigzmXEA *Terms used in Vital Statistics data reports published 1931-1947.
An 'unacceptable American crisis': Cases of babies with syphilis reach staggering numbers
usatoday.com
To view or add a comment, sign in
-
Helping people make informed decisions about genetic testing | Sales Development Manager for specific genetic tests | Patient Advocate for Rare diseases and pediatric cancer
๐ Every year, more than 38,000 newborns benefit from a life-changing diagnosis enabled by neonatal screening, but over 100,000 newborns with rare diseases do not have access to any form of screening at birth. ๐ As you can read more in the Screen4Rare press release: "The WHOโs provision on neonatal screening could be transformative for children around the world with treatable rare diseases. ๐ For current and future generations neonatal screening is not merely a test; it can be a life-changing public health intervention that has the power to diagnose and treat disorders at their earliest stages. ๐ฌ Despite public health becoming a priority concern for many citizens, global access to this cost-effective intervention remains out of reach for many. Only one in three babies undergo any form of screening at birth. ๐ฏ A simple heel-prick test, if universally implemented and accompanied by proper treatment, could help over 100,000 newborns annually and significantly improve their long-term outcome." ๐ก Luckily, we have long-term practice of hashtag #newbornscreening in Serbia, and also one test which can screen the mutations for over 100 diseases. If you want to learn more, click the link here >>> https://lnkd.in/djcuhbH9 #genetictesting #premiumgenetics #newbornscreening #babyshealth
To view or add a comment, sign in
-
Press Alert: ๐ข Newborn Screening Emergency: Urgent Call for Action to Identify 10,000+ Undiagnosed Rare Diseases "The way to accelerate rare diseases is clear and technologies are mature and available now in both the U.S., andย India, but just not being tapped into due to lack of will or supporting public health policies. Fixing this now urgently can dramatically improve the whole equation for rare diseases by bringing millions of undiagnosed patients into the fold." Read Full Story: https://lnkd.in/eseWRdJM Annie Kennedy Indo US Organization for Rare Diseases (IndoUSrare) EveryLife Foundation for Rare Diseases Reena Kartha Nisha Venugopal Frank Sasinowski Anish Bhatnagar Juhi Naithani Narayanan Govindarajan Ramya T karur Lavanyaa Manjunatha, PhD Saundarya M S Deepti Dubey, PhD Dr. Kruti Varshney #AI #Newbornscreening #NBS #rarediseases #undiagnosed #patientidentification #earlydiagnosis
Newborn Screening Emergency: Urgent Call for Action to Identify 10,000+ Undiagnosed Rare Diseases
prweb.com
To view or add a comment, sign in
-
Today, June 28th, we are celebrating International Neonatal Screening Day. #INSD ๐ Patient care and wellbeing is the ultimate goal of all European Blood Alliance membersโ operations. Newborn screening identifies conditions in infants before symptoms appear and has been shown to decrease mortality and increase quality of life. By including Newborn Screening as an integral part of an EU rare diseases strategy, the EU could: - Reduce the inequities which arise from the existing heterogeneity in national approaches to screening and prevention of rare diseases - Facilitate more informed and transparent decision-making in national #PlasmaStrategies, the #CriticalMedicinesAlliance, and other initiatives aiming to ensure patients have stable and adequate access to the medicines they need - Enable the EU become the international example of achieving equity for the rare disease community. Measures designed to optimise the European neonatal screening environment will also better Europeโs position to work with other global regions on ensuring patients there also have their needs met. On this International Neonatal Screening Day, we add our voice to those advocating to raise Newborn Screening as a fundamental tool to access care. Screen4Rare IPOPI - International Patient Organisation for Primary Immunodeficiencies International Society for Neonatal Screeningย The European Society for Immunodeficiencies (ESID)
To view or add a comment, sign in
-
๐Scientific paper: COVID-19 pandemic effects on neonatal inpatient admissions and mortality: interrupted time series analysis of facilities implementing NEST360 in Kenya, Malawi, Nigeria, and Tanzania Abstract: Background The emergence of COVID-19 precipitated containment policies (e.g., lockdowns, school closures, etc.). These policies disrupted healthcare, potentially eroding gains for Sustainable Development Goals including for neonatal mortality. Our analysis aimed to evaluate indirect effects of COVID-19 containment policies on neonatal admissions and mortality in 67 neonatal units across Kenya, Malawi, Nigeria, and Tanzania between January 2019 and December 2021. Methods The Oxford Stringency Index was applied to quantify COVID-19 policy stringency over time for Kenya, Malawi, Nigeria, and Tanzania. Stringency increased markedly between March and April 2020 for these four countries (although less so in Tanzania), therefore defining the point of interruption. We used March as the primary interruption month, with April for sensitivity analysis. Additional sensitivity analysis excluded data for March and April 2020, modelled the index as a continuous exposure, and examinedย models for each country. To evaluate changes in neonatal admissions and mortality based on this interruption period, a mixed effects segmented regression was applied. The unit of analysis was the neonatal unit ( n โ=โ67), with a total of 266,741 neonatal admissions (January 2019 to December 2021). Results Admission to neonatal units decreased by 15% overall from February to March 2020, with half of the 67 neonatal units showing a decline in admissions. Of the 34 neonatal units with a decline in admi... Continued on ES/IODE โก๏ธ https://etcse.fr/TCMa ------- If you find this interesting, feel free to follow, comment and share. We need your help to enhance our visibility, so that our platform continues to serve you.
COVID-19 pandemic effects on neonatal inpatient admissions and mortality: interrupted time series analysis of facilities implementing NEST360 in Kenya, Malawi, Nigeria, and Tanzania
ethicseido.com
To view or add a comment, sign in
-
Peadiatric Screening can prevent genetic diseases such as Familial Hypercholesterolaemia (FH) and improve immensely public health outcomes. #PERFECTO Preventing the Preventable, is an innovative #FH paediatric screening across Europe aiming to enable early diagnosis and management of this rare disease, with the hope that individuals with FH can reach normal life expectancy. #PERFECTO #FHScreening #PreventiveCare #GeneticScreening #SfRD #FH #CardiovascularDisease Referrals https://lnkd.in/eSBjhd8k
๐ย Exciting News: The PERFECTO Project Kicks Off!ย ๐ We are thrilled to announce the launch of PERFECTO: Preventing the Preventable, an innovative FH paediatric screening project aimed at tackling Familial Hypercholesterolaemia (FH) and improving public health outcomes. In January 2024, the PERFECTO kick-off meeting took place in Warsaw, Poland, with the presence of the consortium leader FG Europe Foundation, the European Public Health Alliance (EPHA) and partners from the Cyprus University of Technology, InoMed, and Euroscan. What is FH? FH is a genetic condition characterized by high levels of LDL cholesterol, significantly increasing the risk of early atherosclerotic cardiovascular disease (ASCVD). Despite being the most prevalent genetic cardiovascular risk factor globally, only about 10% of those affected are diagnosed and treated. In Europe alone, over 500,000 children and 2 million adults are affected by FH. Mission: PERFECTO aims to implement FH paediatric screening across Europe, particularly in countries with a high burden of cardiovascular diseases and lower FH awareness. By creating an enabling environment for early diagnosis and management, we strive to ensure individuals with FH can lead normal life expectancies. Key Objectives: ๐นย Provide evidence on the societal impact of FH paediatric screening. ๐นย Promote awareness and early diagnosis of FH. ๐นย Ensure equitable access to screening, focusing on vulnerable populations. #PERFECTO #PublicHealth #FHScreening #CardiovascularHealth #PreventiveCare #GeneticScreening #HealthEquity #InnovationInHealth #SfRD #FH #Atherosclerosis #CardiovascularDisease Referrals https://lnkd.in/eSBjhd8k
To view or add a comment, sign in
-
The long-term human and social costs of Group B Strep (#gbs) are even greater than had been previously understood. A major piece of research sheds light on the longer-term impacts of #gbsย infection in the first days and months of a babyโs life. The study was conducted by a partnership of the London School of Hygiene and Tropical Medicine, U. of London, Aarhus University (Denmark), Amsterdam UMC (Netherlands) and the Dutch National Institute for Public Health and the Environment. It tracked nearly 25,000 children, born in Denmark and the Netherlands between 1997 and 2017. The results are published in the The Lancet Child & Adolescent Health. What this research demonstrates is the impact on the survivors of #gbs. The study found that later in life, 1 in 20 children who experienced #gbs have some form of neurodevelopmental disability. They are roughly twice as likely as other children to have neurodevelopmental impairments and to require special educational support. This means that the long-term human and social costs of #gbs are even greater than had been previously understood. https://lnkd.in/efENTBzJ #gbsย #groupBstreptococcusย ย #healthcareย #researchย #australiaย #pointofcareย #devicesย #biotechย #collaborationย #project
Research reveals long-term impact of Group B Strep | Slater + Gordon
slatergordon.co.uk
To view or add a comment, sign in
75,303 followers
Mobile Developer at Whitesmith.co | Chairperson at APDIP.pt (non-profit organisation)
1moThank you Kedrion for your crucial support in this campaign. I'm super optimistic that this will enable us to unblock the final steps for having NBS for SCID in Portugal ๐