Metrodora Foundation

Propelling forward an entire research ecosystem takes a community! We're so pleased to welcome Alexandra Cohen to the Metrodora Foundation. Alexandra will spearhead the Foundation's efforts to ignite and unite our vibrant, impassioned community of patients, foundations, researchers, clinicians, technology partners, family members and friends. As a patient herself, she has lived the challenges of our community and understands the importance of infusing speed and collaboration into our research. Please join me in welcoming Alexandra - a true #PartnerInProgress!

The latest research, treatment options, and advice on symptom management for dysautonomia in Sjögren’s Disease will be the focus of Dr. Brent Goodman’s upcoming webinar for Sjögren Europe. Patients, caregivers, and healthcare professionals are invited to register at the link below. It is free! Webinar Link: https://rb.gy/tww8k2 #Metrodora #MetrodoraInstitute #MedicalNews #ScienceNews #Autoimmune #POTS #Dysautonomia #EDS #MCAS #Hypermobility #hEDS #JH #HS #Sjogrens #Healthcare

Few doctors understand headaches like Dr. Nada Hindiyeh, MD, FAHS. Even fewer know headaches in relation to POTS, EDS, and MCAS. Dr. Hindiyeh, a neurologist and the director of headache medicine at Metrodora, recently presented on the connection between these three conditions and headache disorders at the American Headache Society’s 66th Annual Science Meeting. “Because what we’re seeing is there’s such a huge interplay in any particular patient between all of these, and you really have to treat the patient as a whole. You can’t just take these diseases in isolation,” she said in a podcast interview with the Global Healthy Living Foundation during the event. Dr. Hindiyeh is the co-chair of a new special interest section specifically for autonomic disorders. The first meeting took place this year. The goal is to raise awareness within the medical community and introduce policies and guidelines to help doctors better diagnose and treat these patients. #Metrodora #MetrodoraInstitute #Healthcare #Research #Neurology #MedicalNews #MultisystemDisorder #POTS #Dysautonomia #MECFS #Migraine #ChronicIllness #CSFleak #NPDH #MCAS #EDS #LongCOVID #ChronicPain #Medical #Medicine #MetrodoraNews #Headache #AHSAM #AHS

Metrodora Foundation is #hiring! We are looking for an experienced research PhD Grant Writer who wants to be a part of a groundbreaking research team. This talented candidate will work collaboratively with best-in-class researchers to advance progress for the millions of patients living with complex, multisystem disorders, such as Long-Covid, ME/CFS, POTS/Dysautonomia, Migraine and more. Please share this post widely to help us connect with talented individuals who share our commitment to making a meaningful difference.

Mark your calendars! One week from today Dr. Goodman will be talking Dysautonomia and answering questions. We’d love to see you in the Metrodora Demo Kitchen or virtually on Teams. It is free to attend! Register Here: https://lnkd.in/gDctuJV8 #Metrodora #MetrodoraInstitute #Healthcare #Research #ChiefMedicalOfficer #MedicalNews #MultisystemDisorder #POTS #Sjogrens #Dysautonomia #MECFS #Endometriosis #Migraine #ChronicIllness #MCAS #EDS #LongCOVID #ChronicPain #Fibromyalgia #FoodAllergy #IBS #IBD #Medical #Medicine #MetrodoraNews

This is a very personal post for me. My family is impacted by chronic, complex conditions. We've lived for over 10 years with these insidious disorders taking over and stealing life's moments big and small from our family and lived firsthand with the debilitation that permeates our patient community - almost 80% of whom are female and a majority, young women in the prime of their lives. I was fortunate enough to be hired years ago and taught by precision medicine and disease research pioneer Kathy Giusti. Kathy instilled in me and everyone around her the importance of aggregating, analyzing and making available vast amounts of high-quality, longitudinal data to accelerate progress for patients. Kathy showed me and others that patient-focused, data-driven collaboration speeds discovery and puts new treatments into the hands of those who need them. I'm forever grateful to her. In 2021, the amazing Fidji Simo was profiled in Fortune for the bold venture she was co-founding, Metrodora Institute, a first-of-its kind fully integrated, multidisciplinary clinical and research center for these invisible conditions - Long-Covid, ME/CFS, Chronic Migraine, POTS, Endometriosis, Fibromyalgia, Sjögren's, Food Allergy, IBS, IBD and more. I inboxed her within minutes and miraculously, she wrote me back just as fast. Fidji was looking for innovators and partners, with the heart and experience that our patients needed to dramatically improve care and expand research. Fidji brought me over to the Metrodora Foundation to help build the research system to catalyze progress and spur meaningful collaboration around expansive research to introduce innovation and again, speed. Again, I've never been more grateful nor more aware of the magnitude of what we need to do. Tens of millions of patients are counting on us. This landmark study will amass and analyze critical information so that we can begin treating our patients by their biology vs. their symptoms, so that we can interest more expert specialists and researchers in joining our community, so that we can finally bring new tests, treatments and cures to our patients who so urgently need us. Rohit Gupta, my partner in science has spearheaded MetX with the passion, experience and intelligence we all need. He sees this space clearly and understands that we are stronger together than we are on our own. We need this ecosystem galvanized- Rohit is making that possible. Thank you Fidji Simo, Rohit Gupta & Metrodora Institute CEO, John Wirthlin for standing together as we break down the barriers of healthcare for our patients. And thank you to our partner PrecisionLife and to the stellar foundations who will work with us to bring hope and help to this community. Open Medicine Foundation (OMF) Solve ME/CFS Initiative Food Allergy Science Initiative Brain Inflammation Collaborative, Inc. Sjögren’s Foundation The Ehlers-Danlos Society. I'm thrilled to announce MetX. And, yes we're just getting started.