TRiNDS’ Post

Did you know that around 350 million people globally suffer from over 11,000 rare diseases, and there are limited approved therapies available for their treatment? In such cases, patient advocacy organizations (PAOs) serve as lifelines, offering educational resources, emotional support, and clinical referrals, ensuring inclusivity in drug development, and representing diverse populations in medical studies. Indo US Organization for Rare Diseases (IndoUSrare), among others, fights for equitable access to treatments, especially for underrepresented minorities and those in low- and middle-income countries. Read this blog to understand why there is a dire need for PAOs for families coping with rare diseases: https://buff.ly/3JV4J2l #rarediseases #indousrare #patientadvocacy #patientcare #patientsupportnetwork

🔬 Research is reshaping the dialogue around obesity, paving the way for innovative solutions and improved patient care. From groundbreaking clinical trials to advocacy efforts for access to medications, the landscape of obesity treatment is evolving rapidly.  Stay informed and join the conversation on #ObesityResearch for a healthier future. Read more here:  https://lnkd.in/e337kqUX #MedicalResearch #HealthcareInnovation #HealthEquity 🌟🩺 

Today on National Patient Advocacy Day, we celebrate the invaluable impact of patient advocacy in bridging the gap between patient communities and the healthcare system.     We are grateful to partner with advocacy groups in rare diseases, Alzheimer's disease and dementia, lupus, multiple sclerosis, and postpartum depression, as we work together to raise awareness and advance medical research and development. Learn more about the patient communities we serve: https://ow.ly/TGMT50T1iSq   #PatientAdvocacy | #PatientsRights | #NationalPatientAdvocacyDay 

At the Foundation for Sarcoidosis Research (FSR), we are dedicated to ensuring equitable access to clinical trials for all, particularly for those affected by rare diseases like sarcoidosis. In our latest feature with Patient Worthy, our CEO, Mary McGowan, highlights the significant disparities in sarcoidosis outcomes among African Americans and the urgent need for their inclusion in clinical studies. Mary's commitment to patient advocacy is driven by her own health journey and experiences. Under her leadership, we are raising awareness and breaking down barriers through initiatives like the "Ignore No More" campaign and the FSR Global Sarcoidosis Clinic Alliance. Our goal is to foster collaboration, advance research, and provide better care for sarcoidosis patients worldwide. Join us in our mission to make a difference and ensure no patient is left behind. 🔗 Read more: https://loom.ly/D6DFBTc #Sarcoidosis #RareDisease #PatientAdvocacy #ClinicalTrials #HealthEquity

With 40 years of advocacy, NORD (National Organization for Rare Disorders) stands as a beacon of support for those navigating the complexities of rare diseases. From a robust database covering 7,000+ conditions to patient assistance programs and clinical trial guidance, NORD offers personalized resources for patients, families, and caregivers. Whether you're seeking information or healthcare professionals looking for continued education, NORD is here to make a difference every day. https://ow.ly/bfzp50Qpp2I #chronic #pain #chronicpain #hope #chronicpainhope #healing #suffering #medical #medicine #fibromyalgia #arthritis #rheumatoidarthritis #lupus #endometriosis #shingles #psoriasis #psoriaticarthritis #migraines #vulvodynia #backpain #neckpain #pelvicpain #interstitialcystitis #spoonie #invisibleillness #hangontohope #livehealthy #mentalhealth

Join the National Academies Committee on Research Priorities for Preventing and Treating Alzheimer’s Disease and Related Dementias (AD/ADRD) for a public workshop on January 16 and 17. This event will explore promising areas of research that have the potential to catalyze scientific breakthroughs in the prevention and treatment of AD/ADRD and identify opportunities to overcome barriers that impede research progress. Learn more and register here: https://ow.ly/1A2K50Qlfpf #Alzheimers #ADRD #Dementia #AlzResearch

TREAT-NMD are proud to be collaborating with 8 other outstanding organisations on The Patient Lifestyle and Disease Data Interactium (PaLaDIn). The PaLaDIn team brings together academics, SMEs and patient organisations from five countries whose partnership allows key stakeholders to share and apply expertise in neuromuscular diseases, patient advocacy and data science. TREAT-NMD recognises the powerful partnership and unique opportunity that the PaLaDIn project provides the neuromuscular community: “We at TREAT-NMD provide a global network of experts in neuromuscular diseases. The strength and expertise of our network, and all nine global partners working together to deliver the PaLaDIn project, means that we can collaborate to transform the NMD field. “The mission of this consortium of partners is to create a data platform that will help to pioneer effective treatments, delivering the best care for those living with NMD and other rare diseases across the world. “One of the biggest challenges we face in our field is the lack of patient data. PaLaDIn is designed to tackle exactly that challenge, working with patients, healthcare professionals and researchers to collate impactful data that can make a big difference in rare disease diagnosis and treatment.” - David Allison, CEO of TREAT-NMD Services Ltd https://lnkd.in/eGynBBQB #PaladInEU #neuromuscular #NMDs #FSHD #Duchenne #researchinnovation #healthinnovation Aparito Parent Project aps Duchenne UK Leiden University FSHD Society Amsterdam UMC Ludwig-Maximilians-Universität München John Walton Muscular Dystrophy Research Centre @ Newcastle University

GRABBING ADVOCACY BY THE HORNS: People with #longcovid are increasingly desperate about the lack of attention and recognition that their vast spectrum of symptoms generate. Some of these patients have started to associate and take action to shape clinical research and generate new knowledge. This article below portrays a series of examples of some promising results and all the work ahead still pending. More collaboration between #patients and #researchers is needed in #medicine 👇🏼 #clinicalresearch #health #publichealth #healthresearch #globalhealth #medicalresearch #covid #infections

Join the National Academies Committee on Research Priorities for Preventing and Treating Alzheimer’s Disease and Related Dementias (AD/ADRD) for a public workshop on January 16 and 17. This event will explore promising areas of research that have the potential to catalyze scientific breakthroughs in the prevention and treatment of AD/ADRD and identify opportunities to overcome barriers that impede research progress. Learn more and register here: https://ow.ly/HP7c50QlfmR #Alzheimers #ADRD #Dementia #AlzResearch

#RareDiseaseDay serves as a beacon of awareness. But it goes deeper than that. The day is also a reminder of the power of collaboration to tangibly help patients and their loved ones on their care journey. We’re a community in rare disease, and we can make the greatest difference together.    This year, the advocacy community joined hands in a pledge to help patients with Short Bowel Syndrome (SBS) feel seen and understood. Their efforts resulted in a first-of-its-kind patient support resource authored by patient experts, community organization leads and medical professionals. This resource aims to empower patients with SBS by providing valuable information, fostering community, and support. As a physician by background, I can attest to the importance of such resources in navigating complex disease journeys. To know they are not alone - and understanding where to seek help - is invaluable.     A huge thanks to Ironwood Pharmaceuticals for coordinating, and everyone involved in this effort, one that I hope the community will find worthwhile. In the words of National Organization for Rare Disorders, “Alone we are rare. Together we are strong.”      #ShortBowelSyndrome  #shortgut