Canadian Association for the Study of the Liver’s Post

We are a group of women whose children suffer from a congenital condition: Prune Belly Syndrome which is a congenital disease, a malformation of babies generally male, a malformation which affects the urinary tract. the symptoms are mega bladder, the absence of testicles, dilation of the ureters, repeated urinary infections and children often die of kidney failure. This syndrome is difficult to manage because it is exceptional and expensive. It requires medical monitoring of the urinary system, involving very expensive x-rays and analyses. The check is quarterly and takes into account: Cytobacteriological examination of urine Renal ultrasound, Azotemia and creatinemia, Intravenous urography (IVU) and/Or renal scintigraphy We are regularly registered and recognized as a public utility association under the receipt No. 18155/MINTSP/DGAT/DLP/DLA-PA of November 16, 2016. We care for thirty sick children in several locations across the country and strongly fight against cultural practices that want us to get rid of our children who they believe are supernatural. This year our association was invited by the network of Prune Belly syndrome patients (Prune Belly Network USA) to participate in the international convention Edition 2024 to share our experiences and advocate for our children. To this end, we are looking for a sponsor, a good will to subsidize our participation (purchases of plane tickets and accommodation) so that we can: - Share our experience in managing plum belly patients - Establish partnerships with other organizations around the world - Raise awareness and popularize advocacy for other members of African countries - Meet specialists to better manage this pathology - And master all the stages of the development of the syndrome and their complications. Support for today Hope for tomorrow!

This is truly remarkable! Not often do you see health disparities identified with decisive, corrective actions taken at such a large scale. Thanks for sharing these metrics Amaka Eneanya, MD, MPH, FASN. Congrats 🎉to everyone involved and the individuals whose lives have been positively impacted as a result of the transplant list modifications. When we know better, we have to do better. Awareness is the place where action begins. Racial bias in clinical calculators and algorithms such as with eGFR (in this case), Vaginal Birth After Caesarean Section VBAC, Pulmonary Function Test (PFT) etc. harm patients. If you haven’t done so already, embrace the recommendations of the joint NKF/ASN Task Force to use the CKD-EPI Creatinine Equation (2021) in the estimation of GFR. It is relevant for labs, clinical practice and in creation of technology solutions for nephrology conditions (e.g. management of CKD) and related conditions such as diabetes, and hypertension. #equityinaction #blackhistory #healthcareonlinkedin

Check out the latest publication by Jan M. Heijdra Suasnabar in Gastroenterology!

Collaboration and open discussion which Public Policy Projects initiate and foster across all stakeholder areas is crucial if we are to manage and work together to reduce the wound care epidemic, we are now faced with.

A First Responder’s Kidney Health Journey: Like the more than 25 million first responders in the United States, Jeff Cooper, a former deputy in the Broward County Polygraph Unit, took an oath to protect and serve his community. However, like many first responders, Cooper’s promise did not necessarily extend to himself — until a worsening medical condition forced him to focus on his health. Polycystic Kidney Disease (PKD) affects more than seven million people worldwide, and in 1975 Cooper became one of those impacted by the disease. His PKD diagnosis, a hereditary condition, took him on a journey that would not only give him access to an innovative new technology, but would also allow him to experience remarkable camaraderie that would eventually stretch beyond the oath to protect and serve. A Lifeline for Patients with End-Stage Renal Disease PKD is a genetic disorder that causes cysts to develop on the kidneys — making them enlarge and lose function. This hereditary condition can lead to the final stage of chronic kidney disease, also known as “end-stage renal disease.” This condition requires more than 70% of patients to undergo dialysis — a process of removing waste products and flushing excess fluid from the blood to keep kidneys functioning and patients alive — or undergo a kidney transplant.Before receiving dialysis, some patients undergo a procedure that creates an access point to their bloodstream, often referred to as a lifeline for dialysis, Arteriovenous (AV) fistulas are created by connecting a vein and artery in the arm, allowing the patient to begin dialysis. Growing up with a father who underwent dialysis for many years, Cooper saw the side effects of the common, surgically created fistulas on his father’s arms (like large, swollen veins) and hoped for a less invasive option that would allow him to continue his normal, active life.While working with his doctor, Cooper discovered the Ellipsys Vascular Access System — a less invasive option for creating AV fistulas that’s done through an out-patient procedure. While potential risks associated with creation and maintenance of arteriovenous fistula exist, the Ellipsys procedure can cut the time between fistula creation to dialysis from six months to two months, potentially translating into accelerated dialysis treatment. A New Outlook, Another MiracleCooper received his Ellipsys- created fistula on December 4, 2020, giving him access to life-saving dialysis. Cooper said he was amazed at how fast he could return to everyday activities after the Ellipsys procedure.After only a few months of adjusting to his new fistula and starting treatment, Cooper received another life-changing surprise. In early February 2021, Guy Kitchens — coincidentally, a police officer in a neighboring county –gave his fellow officer the ultimate gift — Kitchens donated his kidney to Cooper. Thanks… #healthcarenews #DoctorsBusinessNetwork #medicalnews

In November, it was announced that Spinal Muscular Atrophy - a rare and devastating genetic disease- is set to be added to Ireland's newborn screening programme. With SMA affecting approximately 1 in 10,000 babies, this positive decision will mean earlier diagnosis for those born with the condition, increasing their chances for a healthy life and reducing the burden of care for their families.   We join the SMA and rare disease communities in celebrating this welcome decision and continue our efforts here in the UK to encourage the same decision to be made as quickly as possible.   We will continue to highlight the potential benefits and evidence supporting SMA screening implementation in the UK until a timely decision is made.    Learn why #EveryMomentMatters for babies with SMA in our full policy report: https://lnkd.in/eznXsf9R.     #NovartisOK

Last week, the Canadian government's health bureau #HealthCanada, authorized the use of #FerricCarboxymaltose for intravenous (IV) treatment of iron-deficiency #Anemia in pediatric patients one year of age and older when oral preparations of #Iron are not tolerated or ineffective, as well as for the treatment of iron deficiency in adult patients with heart failure and class II/III* 1 Heart Association (NYHA) to improve exercise capacity. Research shows that iron deficiency rates are even higher than previously reported in #Canada, with the condition being particularly prevalent in women of reproductive age and children. Iron plays a vital role in many bodily processes, including the production of red blood cells, the effective functioning of the heart and brain, and the prevention of infection and disease. An iron-deficient body cannot function properly. Common symptoms include fatigue, dizziness, and shortness of breath. Iron deficiency and iron deficiency anemia are estimated to affect one in three people worldwide, and despite the severe consequences and high prevalence, these conditions remain under-recognised and under-treated. The effects of iron deficiency differ from person to person but may be related to a decline in overall health and well-being. Iron deficiency and iron deficiency anemia can be debilitating, exacerbate an underlying chronic disease, and lead to increased morbidity and mortality. Common symptoms include fatigue, pale skin, brittle nails, cravings for non-food items such as dirt, clay, and ice, and inability to concentrate. In children, iron deficiency anemia can significantly affect cognitive and motor development. Find out more information: https://lnkd.in/dZeYBX-m #PBM #PatientBloodManagement #IFPBM

Follow Correlate Health, Inc. In a significant advancement for #racialhealthequity, the formula for a commonly used kidney function test is being revised. Previously, this formula produced different results based on race, often overestimating kidney function in Black Americans, which hindered their access to necessary treatments. Thanks to the tireless efforts of organizations like the National Kidney Foundation and the American Society of Nephrology, and decisive actions by the U.S. organ transplant network, over 14,000 Black kidney transplant candidates are experiencing shorter wait times. This correction is a vital step toward rectifying past injustices, offering renewed hope to patients and their families. This situation underscores the importance of continually reviewing and reforming healthcare protocols to ensure they are both fair and accurate. Achieving a healthcare system free from bias requires persistent transparency and commitment. As we acknowledge this progress, let’s also renew our commitment to developing a healthcare system characterized by fairness, compassion, and dedication. Read more. https://nbcnews.to/4bM4p1N

All-Star line up from our most recent Peer Exchange: Marla Dubinsky, David Rubin, Miguel Regueiro, Remo Panaccione, Sara Horst take the set here to discuss targeting objective treatment goals in Chron's Disease. In our first episode the experts discuss the need to move beyond these initial treatments and consider advanced therapies for moderate to severe cases. The hesitancy to adopt advanced therapies is attributed to factors such as clinician comfort, historical practices, and the predictability of corticosteroid response. The experts highlight he idea to use steroids as a temporary solution while promptly planning for more effective and long-term management strategies. The challenges of short patient visits in community practices are acknowledged, but the importance of initiating discussions about advanced therapy early in the treatment process is underscored. #gastroenterology #ibd

Today, on World Prematurity Day, at inbiome we reflect on the significant challenges premature babies face, especially in relation to sepsis. In the Netherlands, annually, 8,000 neonates are suspected of sepsis and admitted to intensive care, yet less than 1% are diagnosed with this condition. The use of antibiotics and extended hospital stays can adversely affect these infants' delicate microbiomes. Inbiome, alongside our esteemed colleagues including Tim de Meij, is at the forefront of addressing this issue. We're excited to share a recent publication, which introduces the Molecular Culture test to address this issue - a groundbreaking approach capable of detecting sepsis within hours. This advancement holds the potential to spare nearly 7,920 infants from unnecessary antibiotics and hospitalization and represents a pivotal step in neonatal care. The study lays the groundwork for a larger international research project. Our goal is clear: to transform neonatal healthcare and safeguard the health of our youngest patients. Our heartfelt gratitude goes to Thomas Dierikx, Martine Bos, @Henriëtte van Laerhoven, Sophie Van der Schoor, Hendrik Niemarkt, Marc Benninga, Anton van Kaam, Douwe Visser, and of course, Tim de Meij, for their leadership in this field of science and their unwavering commitment. Learn more: https://lnkd.in/eV39MAce #neonatalcare #sepsis #diagnostics #innovation