New #TheHealthAdvocates Podcast Episode ??? We’re reporting live from the American College of Rheumatology (ACR) Convergence 2024 in Washington, D.C.! This global event gathers leading experts in rheumatology to share insights that are shaping the future of health and advocacy. In this episode, we sit down with rheumatologists, researchers, and patients to unpack key takeaways and advancements in the field. Shilpa Venkatachalam ?? Tune in now and join the conversation! https://lnkd.in/gjzztr9M #ACR2024 #HealthAdvocacy #Rheumatology
Global Healthy Living Foundation
非盈利组织
Upper Nyack，New York 2,732 位关注者
GHLF is a 501(c)(3) non-profit advocacy organization improving the quality of life for people with chronic illness.
关于我们
The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints?, the digital arthritis community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through ArthritisPower? (ArthritisPower.org), the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, and hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. Visit www.GHLF.org for more information. The Global Healthy Living Foundation is committed to equal opportunity for all full- and part-time employees, interns and contractors. It is GHLF policy that no one shall be treated differently, separately, or have any action directly affecting them taken on the basis of race, religion, national origin, marital status, sex, sexual orientation, gender identity, military status or disability where they are otherwise qualified or could be with reasonable accommodation. The immediate remedy for any act of discrimination shall be to end it, treat the individual equally, and, as much as practically possible, to eradicate any effects of discrimination. Discipline will be imposed where appropriate. Web sites: https://www.GHLF.org https://www.CreakyJoints.org https://www.ArthritisPower.org https://www.50StateNetwork.org https://www.FailFirstHurts.org https://www.CreakyJoints.org.au Facebook: https://www.facebook.com/creakyjoints Twitter: @GHLForg, @CreakyJoints Instagram: @Creaky_Joints
- 网站
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https://ghlf.org
Global Healthy Living Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 11-50 人
- 总部
- Upper Nyack，New York
- 类型
- 非营利机构
- 创立
- 1999
- 领域
- health、community forums、outreach、rheumatoid arthritis、arthritis、research、education、advocacy、non-profit、racial disparity、community partnerships、resources、patient-driven、migraine和headache
地点
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主要
获取路线
515 N MIDLAND AVE
US，New York，Upper Nyack，10960
Global Healthy Living Foundation员工
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Susan Jara
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Steven Newmark
Chief, Legal & Policy Affairs at Global Healthy Living Foundation
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Anne M. Sydor, PhD
Lead Consultant and Grant Writer | PhD in Neurobiology
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Robert Popovian
Clinical Pharmacist | Health Economist | Expertise in Drug Pricing, Spending, Affordability and Access | Patient, Healthcare Professional, Consumer…
动态
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Live from sunny D.C. and #ACR24! ?? This year’s conference is so much more than a meeting — it’s an inspiring reminder of what we can achieve together. For those of us living with rheumatic diseases, #ACR24 represents hope, progress, and the power of collaboration. ?? Shilpa Venkatachalam ? From cutting-edge research to patient-centered breakthroughs, the energy here is truly electric. Together, patients, doctors, and researchers are driving change, and the future of care has never looked brighter. ???? #Rheumatology
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Global Healthy Living Foundation转发了
The Global Healthy Living Foundation (GHLF) presented groundbreaking research at the 2024 American College of Rheumatology (ACR) Convergence in Washington DC, marking their ninth consecutive year and coinciding with PatientSpot’s 10th anniversary. This patient-powered research registry, formerly known as ArthritisPower, underscores GHLF’s commitment to improving care for individuals with chronic inflammatory diseases. This year’s presentations centered on enhancing care for conditions such as polymyalgia rheumatica (PMR), rheumatoid arthritis (RA), and psoriatic arthritis (PsA), while exploring the potential of emerging technologies to improve patient outcomes. This presentation also aligns with CreakyJoints? 25th anniversary, GHLF’s online community for arthritis patients and caregivers, further highlighting their long-term dedication to patient advocacy and research.A significant portion of GHLF’s research at ACR focused on PMR treatment and addressing gaps in patient care. One study revealed a prevalent dependence on steroids for PMR and PMR with giant cell arteritis (GCA), often without supplementary therapies to mitigate steroids’ long-term side effects. This emphasizes the critical need for continued research into new therapeutics and the importance of clinical trials to explore more balanced and comprehensive treatment strategies. The ultimate goal is to reduce the reliance on steroids and improve the overall treatment experience for PMR patients. Digital health innovations also played a prominent role in GHLF’s research. The multi-year WEAR study demonstrated how integrating Fitbit data with patient-reported outcomes enhances RA monitoring without increasing patient burden. This approach emphasizes personalized, patient-centered healthcare, where patient-reported data provides valuable insights for guiding treatment decisions and proactive disease management. Another study explored the feasibility of Remote Therapeutic Monitoring (RTM) for musculoskeletal diseases using the PatientSpot app. The positive feedback from both patients and staff suggests that RTM offers significant potential for improving patient engagement and providing continuous support between clinical appointments, facilitating proactive management and timely interventions. ???????? ????????: https://lnkd.in/d5Ma96uG Louis Tharp Molly Schreiber
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???Celebrating Eileen Davidson's 100th essay for CreakyJoints.org! Eileen's work inspires patients, tackles tough topics, and elevates the patient voice. Her dedication reminds us why sharing lived experiences is so powerful.??? Thank you for your incredible impact! ??Read her latest essay: https://lnkd.in/gAMdCRBq #PatientAdvocacy #RA #ACR24
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Dr. Christopher Morris shares why innovative treatments like #CART therapy offer hope for these “unglamorous” but life-changing conditions. Let’s keep raising awareness.??? #Rheumatology #Lupus #Scleroderma #ACR24
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A big thank you to Dr. Jeffrey Curtis for discussing the role of "clinical suspicion" in diagnosing polymyalgia rheumatica, especially in older patients with new or persistent symptoms. Feeling achy or having "the blahs" might seem insignificant, but these signs shouldn’t be overlooked. Conversations like these at #ACR24 help improve early detection and care for patients. #PMR #Rheumatology?
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???"ACR is the biggest show in rheumatology. It's where rheumatology meets. It's called convergence for a reason." Dr. Swamy Venuturupalli, MD, FACR, Founder and CEO of @attunehealth, shares why #ACR24 is the highlight of the year for rheumatology professionals. With over 20 years of clinical trial experience, he’s excited to dive into sessions on CAR T cell therapies for lupus—a promising innovation he hopes to bring back to his patients. ACR isn’t just about research—it’s about building connections and fostering collaboration to advance care for rheumatology patients worldwide. #Lupus #Rheumatology #PatientCare?
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???“Wow. I feel amazing. It’s all about the connections.” Cristina Montoya shared what makes #ACR24 so meaningful: “CreakyJoints has brought the patient’s voice. It’s amazing to see how much it’s grown globally, and now into my own Hispanic/Latinx community with resources in Spanish. It’s an honor to be part of this.” Patient voices are at the heart of everything we do.???
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Talking about emerging new therapies like neuroimmune modulation implantable devices for RA- and why it matters to patients. #SetPoint Shilpa Venkatachalam
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Another day of impactful presentations at #ACR24! We’re diving into: ???Challenges and Opportunities in Post-Pandemic Remote Therapeutic Monitoring for Musculoskeletal Disease ???The most prevalent self-reported comorbidities in RA, PsA, and AxSpA Shoutout to Angela Degrassi and Laura Stradford for leading these important discussions!????? #Rheumatology #PatientCare #ACR24 Shilpa Venkatachalam Shelley Fritz David Curtis?
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