Foundation For Sarcoidosis Research

Do you have sarcoidosis? We need to hear from you! Join the Foundation for Sarcoidosis Research (FSR) on October 28, 2024, from 10am-3pm EST for an interactive Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting on Sarcoidosis with the FDA. This virtual, public meeting intended to provide patients and caregivers with a unique opportunity to share about their unmet needs, the quality-of-life impacts of sarcoidosis, and preferences in respect to symptom management and the development of new therapies. Participate by joining online on October 28 and: Fill out live meeting polls Call-in to share your experience with sarcoidosis Write-in your thoughts and comments Listen and learn This EL-PFDD meeting is a complement to the FDA’s PFDD initiative. The patient input collected during this meeting and reported after this event will have a lasting impact on the lives of those with sarcoidosis as it will inform the development and regulatory review of new drugs for this rare disease. https://loom.ly/JTR3Oec Register now and join to hear the collective voices of patients with sarcoidosis.

🌍 On World Mental Health Day, let's recognize the unique mental health challenges sarcoidosis patients may face. Living with a chronic illness can lead to anxiety, stress, and isolation—but you are not alone. Today, and every day, it's crucial to prioritize your mental health, lean on your community, and find moments of calm in the journey. 💜 #WorldMentalHealthDay #MentalHealthAndSarcoidosis #YouAreNotAlone

On November 3rd, I will be running the NYC Marathon to raise awareness and funds for the Foundation for Sarcoidosis Research. As many of you know, my dad was diagnosed with Sarcoidosis 10 years ago. Sarcoid has greatly impacted the way that he is able to live his life. However, the impact his entire care team has made on his health journey has made a profound impression on him and our family, and is a large reason I feel so passionate about what I do as a career. I am over halfway to my fundraising goal and appreciate any support you can give to a cause that is very near and dear to my heart. 💜 Foundation For Sarcoidosis Research Ryan Raffensperger Jennifer Bulandr

FOUNDATION FOR SARCOIDOSIS RESEARCH GLOBAL SARCOIDOSIS CLINIC ALLIANCE Sarcoidosis Community Group at UNC Health Chapel Hill Empowerment through Education, Support, & Networking Join our Support Group Meeting: Date: Saturday | October 19th, 2024 Time: 11:00 am - 12:30 pm EST Who: Patients & Caregivers Where: Via Zoom FSR-GSCA Community Groups offer education and networking for sarcoidosis patients and their loved ones. Access critical services, learn new management strategies from experts, and find support from peers. To register and/or learn more about other support group meetings visit: https://loom.ly/-wJWpKc #SarcoidosisSupport #FSRGSCA #UNCHealth #SarcoidosisAwareness #PatientSupport #ChapelHill

Join our FSR Sarcoidosis Support Group! Connect with others living with sarcoidosis in our peer-led support group, guided by experienced FSR Patient Volunteers. This group provide a safe space for sharing experiences, emotional support, and open discussions. Monthly Sessions: Second Thursday: 5:00-6:15 PM CST Register now to secure your spot. Limited spaces available. For more info, visit: https://loom.ly/pg8MT1c #SarcoidosisSupport #FSRSupportGroup #SarcoidosisAwareness

Honored to represent the patient voice in thinking about #AI #LLM and #clinicalcare #sarcoidosis Center for Innovation & Value Research Foundation For Sarcoidosis Research John Nosta Christopher Mazzanti Sherry Yun WANG

Share Your Story, Empower Change! Have you or a loved one faced challenges participating in clinical trials? We’re looking to amplify Black patients' voices to shine a light on the barriers that prevent diversity in clinical trials—whether it’s the cost of participation, travel difficulties, or concerns about job security. Your story can make a difference! Help us advocate to reduce barriers experienced by those in your community. All stories will be shared anonymously. Click here to share your experience and be part of the movement for change. https://loom.ly/aH72ems #IgnoreNoMore #DiversityInTrials #BlackHealthMatters #EmpowerThroughStories

Sarcoidosis 101 en Español Por favor acompañe al Dr. Enrique Calvo-Ayala, neumólogo de la clínica de sarcoidosis y el programa de enfermedades intersticiales pulmonares en el William Beaumont University Hospital, y miembro fundador de la Alianza Global de Clínicas de Sarcoidosis de la FSR, para nuestro primer webinar en español en donde se va a discutir una perspectiva general de la Sarcoidosis, sus síntomas, pruebas diagnósticas y opciones de tratamiento actuales. El Dr. Calvo-Ayala es especialista en Medicina Interna, Neumología y Cuidado Crítico, con certificaciones del Consejo Americano de Medicina Interna (American Board of Internal Medicine). Oriundo de Colombia, es egresado de la Facultad de Medicina de la Universidad Nacional de Colombia, hizo su residencia en Medicina Interna en el Hospital Henry Ford y su subespecialidad en Neumología y Cuidado Crítico en la Universidad de Indiana. Durante su entrenamiento en la Universidad de Indiana, también obtuvo una maestría en investigación clínica. El principal interés del Dr. Calvo-Ayala es el manejo de pacientes que viven con sarcoidosis que afecta múltiples órganos, y tiene publicaciones en libros y revistas médicas, además de ser coinvestigador en varios estudios clínicos. Este evento ocurrirá el viernes 8 de noviembre a las 4pm EST e incluirá la oportunidad de formular preguntas. Es necesario registrarse. Por favor regístrese aquí. https://loom.ly/lIEwFio Sarcoidosis 101 in Spanish Please join Dr. Enrique Calvo-Ayala, pulmonologist at the sarcoidosis and interstitial lung disease program at William Beaumont University Hospital, and a founding member of the FSR-Global Sarcoidosis Clinic Alliance, for our first-ever Spanish language webinar providing an overview on sarcoidosis, symptoms, tests, and current treatment options. This event will take place on Friday, November 8th, at 4pm EST, and will include a Q&A session. Please note: This webinar will be presented in Spanish. To view the Sarcoidosis 101 webinar in English, click here: https://loom.ly/FXgMVyc

New FSR Sarc Fighter Podcast Episode Lindsay Lawrence was the picture of health. Active, mother of two children, healthy eater. But something just wasn't right. It got worse and worse until her doctor told her that her lungs were being damaged by sarcoidosis. In the time since diagnosis, she has been searching for the medications that work, while sarcoidosis creeps into other parts of her body. Listen in this latest episode of the FSR Sarc Fighter Podcast, as host John Carlin interviews Lindsay, who shares her sarcoidsois story including her terrible bout with prednisone. https://loom.ly/8T4RX7U #FSRSarcFighter #Podcast #StopSarcoidosis

Do you have sarcoidosis? We need to hear from you! Join the Foundation for Sarcoidosis Research (FSR) on October 28, 2024, from 10am-3pm EST for an interactive Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting on Sarcoidosis with the FDA. This virtual, public meeting intended to provide patients and caregivers with a unique opportunity to share about their unmet needs, the quality-of-life impacts of sarcoidosis, and preferences in respect to symptom management and the development of new therapies. Participate by joining online on October 28 and: Fill out live meeting polls Call-in to share your experience with sarcoidosis Write-in your thoughts and comments Listen and learn This EL-PFDD meeting is a complement to the FDA’s PFDD initiative. The patient input collected during this meeting and reported after this event will have a lasting impact on the lives of those with sarcoidosis as it will inform the development and regulatory review of new drugs for this rare disease. https://loom.ly/JTR3Oec Register now and join to hear the collective voices of patients with sarcoidosis.