Jack and Jill of America, Inc.’s Post

It's important to make regular visits to your healthcare provider! For 2024, why not add it to your New Year's resolution? Great piece by Dr. Nagendra Gupta!

Rare Updates! The new UK government has quickly prioritised patient access and NHS performance by announcing an independent review led by Lord Darzi to inform a new 10-year health plan.    So this weeks' Westminster Forum Projects event which gathered experts from across the UK to discuss rare disease services, with input on improving diagnosis, care and treatment for rare patients, was timely and relevant given the increased healthcare focus.    I joined an expert panel on research and innovation for rare diseases with Catriona Crombie, Victoria A Lund, Professor Simon Johnson and Lucy Allen. We highlighted the UK’s strong research and clinical skills in rare diseases and how they can be used to boost discovery and innovation for patients and attract more research and development investment.    There has been progress in increasing awareness and attention for rare diseases in recent years. This needs to continue as outlined in the UK Rare Disease Framework to achieve health equality for rare patients and build on the UK’s strengths in this area. Paul Clift Lucy McKay Derralynn Hughes; Paramala Santosh Ana Lisa Tavares #RareDiseases #HealthEquity #Alexion #whfevents

Open Access Government: Understanding the impact of ME/CFS with Dr Charles Shepherd "We spoke to Dr Charles Shepherd, Hon Medical Adviser at ME Association, member of the NICE guideline committee on ME/CFS and DHSC Delivery Plan on ME/CFS Working Group, about the impact of myalgic encephalomyelitis/chronic fatigue syndrome and why more needs to be done to address gaps in care and research." Read more and find a link to the article here: https://lnkd.in/ea7k4bFZ #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Research

It was great to discuss how life-course #immunization can benefit countries and all of their citizens by being more person-centered, integrated with other initiatives and building on the lessons (good and bad) that we learned from #COVID-19. There isn't a more pivotal time to take a good look at how we can achieve better health for all. Thanks to Global Coalition on Aging, International Longevity Centre - UK and International Longevity Center-USA for bringing us together to focus on solutions. We are so interconnected in so many ways and a broader approach to vaccination is essential for health, economic and social well-being in the diversity of settings.

Science, the modern language of the mystical, has played a pivotal role in demystifying the extraordinary capabilities of the human mind and body. I wanted to share this historical moment and how grateful I am to be part of this amazing research team and the groundbreaking studies we have performed. https://lnkd.in/gpWJQHap #medical #scientificresearch #proof #nursesonlinkedin #nurseleaders #femaleleaders #latinaleaders #healthcare

Patient navigation job roles by levels of experience: Workforce Development Task Group, National Navigation Roundtable #NASW is a member of the American Cancer Society’s National Navigation Roundtable and contributed to this publication to highlight the role of patient navigators in improving health outcomes for cancer patients. The article describes roles and responsibilities at the Entry, Intermediate, and Advanced levels for patient navigators, nurse navigators, and social work navigators. Learn more: https://buff.ly/3SuBwPL

Now is the time to share your #MillionsMissing #teachMETreatME photos, videos, or artwork! Here is some sample language you can use in a share in case it is helpful. It works for allies too! We need our allies to share! And sharing your own photo or video is best but we offer graphics if you need them: https://lnkd.in/e5wRWER9 SAMPLE POST: 👇 Myalgic encephalomyelitis (ME, aka ME/CFS) is not being taught to healthcare providers. They cannot diagnose and treat ME without that knowledge. Millions of people are going without care but we can change that. Please ask your healthcare providers to take this CME. Sample language to copy and paste is at the end of this post. I am joining #MEAction’s #TeachMETreatME campaign so that (Fill in the blank - I. my neighbor, my parent, etc) can get the care they(or I) and the millions like them (or me) deserve. SAMPLE LANGUAGE TO CLINICIAN: 👇 I’m reaching out to you because there is a CME that really deserves your attention. May is national myalgic encephalomyelitis (ME, or ME/CFS) month! Approximately half of people with Long COVID meet the diagnostic criteria for ME/CFS, so it’s more vital than ever to know how to diagnose and manage this common illness. Mayo Clinic Rochester clinicians and the Scientific Director at MEAction, a nonprofit for people with infection-associated chronic illness, created this Concise Clinical Review in Mayo Clinic Proceedings, with an associated one-credit CME. Would you be willing to take the CME and share it with your colleagues? It would mean a lot to me and patients like me! View the paper and take the CME here: https://bit.ly/MayoCME8 #PwME #MyalgicEncephalomyelitis #MECFS #LongCovid #MedEd ID: I am joining #MEAction’s Teach ME Treat ME campaign this #MillionsMissing so that the millions of people living with myalgic encephalomyelitis (aka ME or ME/CFS) can receive the care they deserve.

This ‘WhatsApp’ message changed my life. A single notification that redefined my belief in the power of science. It was a message from a mum whose child had battled leukaemia. (Btw - I have full permission to share this ❤️🩹) Her son is now 'cancer-free' thanks to cutting-edge CAR-T therapy. I met this mum two years ago in the parent kitchen at the hospital. My son was in hospital due to a Sickle Cell crisis. Her young son had Leukaemia. They had spent the last few years in and out of hospital. When we met, her son had just received T cells that had been reprogrammed in the US. They had been reprogrammed to target and attack cancer cells 🤯🧬 The engineered T cells had been given intravenously (through an IV line), like a blood transfusion. When we met, they were waiting and watching for the results. This mum was so brave. Her son was inspiring. They had been through the biggest fight of their lives. Their story ignited hope within me and reaffirmed my faith in the evolution of medical science. We swapped numbers and stayed in touch. He is still doing well and has plans to study medicine at Oxford!👏🏾✨ Here are some things I’ve learnt from people dealing with life’s most significant challenges: Resilience: Witnessing families navigate the complexities of illness with determination reminds us that resilience is not just a trait—it's a force that propels us forward. Embracing Innovation: Medical breakthroughs like CAR-T therapy highlight the transformative impact of scientific innovation. The Power of Community: Our encounters in shared spaces like the parent kitchen highlight the importance of supportive communities and meaningful connections during struggle. Hope as a Catalyst for Change: The message of 'cancer-free' isn't just a declaration; it's a beacon of hope that fuels optimism and belief in a brighter future. This reminds us to celebrate researchers, healthcare professionals, and families who inspire us with stories of resilience and triumph! Together, we can amplify awareness and support for ongoing scientific advancements, ensuring brighter tomorrows in healthcare. Repost for anyone who needs to see this today ♻️ #science #healthcare #parenting #healthcareinnovation