IgG4ward!’s Post

We want to answer your IgG4-RD questions! Please join IgG4ward! Founder John Stone MD, MPH and IgG4ward! Director of Patient Advocacy Katharine M. Provencher, MSW for an in-depth IgG4-RD Q&A on Friday, May 31, from 9 – 10:30 A.M. EST. Register for the webinar and submit questions here: https://rb.gy/0pxzyp Katharine and Dr. Stone will address topics including the following and more: ◾️IgG4-RD diagnosis and treatment options ◾️Insights for educating others about IgG4-RD ◾️IgG4-RD resources ◾️Tips for IgG4-RD patients and caregivers We will address as many questions as we can, mindful of time constraints! #igg4rd #igg4relateddisease #raredisease #rarediseaseawareness

In this video, Sonia Sgro, Global Head Patient Advocacy, LSD, discusses the ongoing challenges that many members of the lysosomal storage disorder (LSD) community face in receiving a diagnosis and accessing treatment. During the SSIEM 2024 Annual Symposium, we reaffirmed our commitment to amplifying the voices of underserved people in the healthcare system, including individuals living with LSDs such as Fabry disease and alpha-mannosidosis. #SSIEM2024 #Fabry #AlphaMannosidosis #RareDiseases #ChiesiGlobalRareDiseases

There are many patient registries, how do you know what sets them apart? Discover some ways in which ours stands out and what we do to make it successful! Join the registry: https://lnkd.in/eEEKsiWt Hear more in the webinar held by Critical Path Institute (C-Path), the "The Influential Role of Patient Advocacy Groups in Registry Data Efforts": https://lnkd.in/eweFknAM #leighsyndrome #mitochondrialdisease

Sarcomas are often misdiagnosed, which can lead to incorrect and ineffective treatments. In fact, up to 57% of sarcoma diagnoses are changed after a second review by pathologists. We need more specialized experts in sarcomas to ensure accurate diagnoses on the first try – and the least invasive treatment plans for patients. SPAGN works with patient advocacy groups all over the world to raise awareness and advocate for patient-centered research in sarcomas to improve patients’ chances of a successful treatment. #SarcomaAwarenessMonth2024 #EarlyDiagnosisSavesLives

World Narcolepsy Week 2024 is on. Estimates indicate that most individuals with narcolepsy are either undiagnosed or misdiagnosed, with diagnosis often delayed by 8 to 15 years due to limited awareness and prevailing misconceptions, affecting both the general public and healthcare providers. Through collective action, we can minimize diagnostic delays, reduce stigma, and improve treatment outcomes for narcolepsy. Here is a link to find out more. https://lnkd.in/gS6AScdM

Yesterday my sweet old dog bit me. It turns out that the old boy was not feeling well. I hadn't been paying attention to his non-verbal signs and he didn't have the words to tell me what was going on. This got me thinking about the importance of the medically integrated team. When patients are faced with hearing, "you have cancer" or are dealing with the sometimes awful side effects of treatment, they often don't know the words to convey what is going on or what they need. Often, they don't know what they don't know. Keep fighting for patients. Keep supporting them to the best of your ability. You are amazing! This incident reinforced my commitment to patient advocacy. Every individual deserves to feel safe, informed, and supported on their healthcare journey. Keep being the advocates our patients need, turning their moments of vulnerability into opportunities for compassion and care. #passionforpatients #PatientAdvocacy #Healthcare #EmpathyInMedicine #PatientCare #HealthEquity #CompassionateCare #MedicalProfessionals #HealthcareInnovation #PatientSupport #HealthCommunication #medicallyintegratedcare

Meet Trishna Bharadia, BA(hons), MFPM(Hon), a leading advocate for MS (and many other) patients worldwide. In the latest of our Meet the Patient conversations, She shares her experiences of living with multiple sclerosis and the impact of her diagnosis on her work and personal life. Curious to learn more about Trishna's journey and advocacy work? Sign up for our newsletter and get instant access to this exclusive interview. https://ow.ly/uS5v50Tryt8 #PatientAdvocate #MultipleSclerosis #PatientExperience

In August, patient advocacy leaders and health care professionals from the Asia Pacific region gathered to discuss #remission becoming achievable for some patients with rheumatoid #arthritis and #spondylarthritis due to treatment advances. Remission should be the goal for all patients, as it significantly improves quality of life. #WAD24 Learn more during #WorldArthritisDay ▶️ https://bit.ly/3zTREov

👁️ It's Thyroid Eye Disease Awareness Week! 👁️ At leapcure, we are reflecting on the incredible progress made in Thyroid Eye Disease (TED) advocacy and research spaces. Over the past few years, we've been fortunate to witness, and be a part of, the growth of awareness, collaboration, and breakthroughs that have positively impacted so many lives. From fostering partnerships with advocacy organizations to driving patient-centric clinical trials, we've seen firsthand how the power of community and innovation can transform care for individuals living with TED. This week, we celebrate the strides made in education, support, and research and remain committed to advancing solutions that bring hope and progress to patients worldwide. 💙 Let’s keep the momentum going!#TEDAwarenessWeek #ThyroidEyeDisease #PatientAdvocacy #Leapcure #ClinicalResearch #AdvancingCare

As physiotherapists, advocating for patients within a multidisciplinary team is crucial, especially for complex neuro-respiratory disorders. Recognising and addressing issues early can prevent serious complications. Lack of confidence in advocacy can hinder patient care. Always assess patient stability and communicate effectively. Enhance your skills and confidence by joining our free live masterclasses. Sign up via the link in bio! #PhysioLife #PatientAdvocacy #NeuroRespiratoryCare #HealthcareProfessionals #TeamworkInHealthcare #ContinuousLearning #SignUpNow Link in Bio 🔗