National Kidney Foundation的动态

Congratulations to Thomas Payne with your Journal of Health Care Chaplaincy publication, Chaplaincy and outpatient cancer care in a faith-based health system: lessons learned when imbedding two full time chaplain positions in a cancer institute with a faith-based heritage. This abstract screams tug the bow on the gift wrap to discover what’s inside: “…few articles describe how religious organizational cultures influence the creation and implementation of FTEs intended to meet the evidence-based recommendations of accreditors. This is a lacuna, given that board certified chaplains are measured on their ability to integrate #spiritual care into the life and service of their institutions. In response, this article describes the creation and implementation of two #chaplain positions devoted to a group of outpatient cancer clinics in a large Catholic healthcare system.” ?? https://lnkd.in/gqhyMuQB

One KIF1A video per day until February 29th. This month you’ll see many different families tell their stories. Today we start at ground zero with Susannah, the first patient identified and the first enrolled in our thriving Natural History Study. “With these rare diseases there is no industry standard because they’re not ‘standard’ diseases. It’s up to the families to work with the scientific community to create that industry standard.” -Luke Rosen, co-Founder https://lnkd.in/e6jr64t9 In 2019, when this video was made, there were ~100 known patients affected by disease-causing mutations in KIF1A (KAND). In just five years our community has grown exponentially and continues to grow every single day. With every new family, and every new day, we grow stronger. This is an urgent mission. Join us. We now realize each mutation is different, and some are so novel that only one person carries that specific change in the KIF1A gene. Together, with partners like n-Lorem Foundation, Columbia Children's Health, The Jackson Laboratory, NeuCyte, Boston Children's, and many more, we’re making strides to change the trajectory of this devastating disease. It’s crucial for every new family to participate in clinical research. It’s the first step towards treatment for KAND, and for all rare disease families. #FebruaryFacts #RareDiseaseTruth #RareDiseaseDay #KIF1A #NanoRare

?? If you couldn't join for DTI CLINICAL WEBINAR with Dr. Maria Adele, you can see it here! And remember 18th December: DTI INTERNATIONAL WEBINAR / Global perspective on organ trafficking. ?? Don't lose it!! ?? ??

Important consensus paper on the care of children with homozygous familial hypercholesterolemia by Doortje Reijman et al. is out now! It was an honor to collaborate with leading experts from all over the world and to be able to contribute to this paper with a section on Lp(a) levels. https://lnkd.in/e8u-5GPK

Are you wondering why different Australian states have different policies when it comes to breast density notification? Here is the full explainer, and how you can be involved in shaping national BreastScreen policy. https://lnkd.in/dk6Fc-Ep

A great read for anyone providing expert scientific testimony. "Say I go to the doctor’s and I get a cancer test. It’s quite an accurate test: if I have cancer, it will correctly say so 99 times out 100; if I don’t have cancer, it will correctly say so 99 times out of 100. If I get a positive result, then, what’s the chance that I have cancer? Is it 99%?" https://lnkd.in/gi2awscP #forensic #medicine #science #law #justice

The Impact of Early Palliative Care: Quality of Life and Survival Benefits Initiating palliative care early in the course of a serious illness can have profound benefits, not only for quality of life but also for overall survival. Substantial evidence supports this, including a landmark 2010 study by Dr. Jennifer Temel and her team at Mass General. In their study on patients with metastatic non-small cell lung carcinoma, early palliative care led to significant improvements in quality of life and mood. Remarkably, patients receiving early palliative care experienced less aggressive end-of-life care and, crucially, lived longer than those who received standard care alone. As someone who has worked with cancer patients for over 25 years, I have always prioritized two goals: enhancing the quality of life and, where possible, extending survival. When palliative care is introduced early, patients often experience fewer ER visits, fewer treatment breaks, and overall better outcomes from their disease-directed treatments. This approach not only reduces suffering but can also positively impact survival. Early palliative care isn’t just about easing symptoms—it’s about giving patients the best possible chance at a longer, more comfortable life. Watch this video to learn more: https://buff.ly/3z2JF8t #PalliativeCare #QualityOfLife #CancerCare #Oncology #PatientCare #SurvivalRates #Healthcare #EarlyIntervention #PalliativeMedicine

We prepare ourselves for so many possible contingencies. Wouldn't it make sense to be prepared for something that's inevitable? Please read this piece co-authored by one of the most awesome people in my life, Smriti Rana

https://lnkd.in/gU_pmmbB TCF-1 negatively regulates the suppressive ability of canonical and noncanonical Tregs

Great article to describe the work we do at NMDP: innovative research, diverse registry recruitment and philanthropy to fill all the financial barriers so that patients can receive their life-saving cures. https://lnkd.in/gUft63R7