Foundation For Sarcoidosis Research

Happening NOW! We are almost two hours in and have heard from a varity of patients already. Join us LIVE for a Unique Opportunity to Share Your Sarcoidosis Story! We need your voice! Right now, the Foundation for Sarcoidosis Research (FSR) is hosting a virtual Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting with the FDA. This is your chance to share your experience, insights, and unmet needs directly with those working to develop and regulate new therapies for sarcoidosis. Tune in until 3 PM EST to: Answer live polls Call in to share your personal journey with sarcoidosis Write in your comments and insights Listen to the experiences of others This meeting is part of the FDA's PFDD initiative and will play a critical role in shaping future sarcoidosis treatments. Don’t miss the chance to contribute to this impactful conversation and help inform drug development for sarcoidosis. 🔗 Join NOW: https://loom.ly/JTR3Oec

Happening NOW! Join us LIVE for a Unique Opportunity to Share Your Sarcoidosis Story! 📣 Are you living with sarcoidosis, or know someone who is? We need your voice! Right now, the Foundation for Sarcoidosis Research (FSR) is hosting a virtual Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting with the FDA. This is your chance to share your experience, insights, and unmet needs directly with those working to develop and regulate new therapies for sarcoidosis. Tune in until 3 PM EST to: Answer live polls Call in to share your personal journey with sarcoidosis Write in your comments and insights Listen to the experiences of others This meeting is part of the FDA's PFDD initiative and will play a critical role in shaping future sarcoidosis treatments. Don’t miss the chance to contribute to this impactful conversation and help inform drug development for sarcoidosis. 🔗 Join NOW: https://loom.ly/JTR3Oec

Tomorrow is the day, please join the Foundation for Sarcoidosis Research (FSR) on Monday, October 28th 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: https://loom.ly/o0boBO0 Fill out live meeting polls Call-in to share your experience with sarcoidosis Write-in your thoughts and comments Listen and learn Register: https://loom.ly/JTR3Oec 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. Register now and join to hear the collective voices of patients with sarcoidosis.

John Carlin and mary mcgowan in-studio prep for tomorrow's Externally Led Patient Focused Drug Development Meeting with the FDA. Foundation For Sarcoidosis Research #sarcoidosis #drugdevelopment #raredisease #rareasone Join us here 10/28 from 10am-3pm ET. There are lots of opportunities for those impacted by sarcoidosis to participate through live polls, call-in opportunities, and online comment submission form (comments will be read live in the air). https://lnkd.in/gth-7ftX

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

Join us in honoring Sabrina Sonnier for her incredible 12 years of service as a sarcoidosis advocate and founder of the SWLA Sarcoidosis Support Group. Sabrina’s passion has brought vital support, education, and awareness to her community, making a lasting impact on those affected by sarcoidosis. Read her inspiring journey in our latest blog post: https://loom.ly/qQGu0i8 #SarcoidosisAwareness #FSRAdvocate #12YearsOfService #CommunitySupport

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: https://loom.ly/o0boBO0 Fill out live meeting polls Call-in to share your experience with sarcoidosis Write-in your thoughts and comments Listen and learn Register: https://loom.ly/JTR3Oec 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. Register now and join to hear the collective voices of patients with sarcoidosis.

In Episode 124 of the FSR Sarc Fighter Podcast, we're diving into a pivotal moment for the sarcoidosis community! On October 28th, the Foundation for Sarcoidosis Research will lead an Externally Led Patient Focused Drug Development discussion with the FDA. This is a powerful opportunity for patients, caregivers, and medical experts to share what it's like to live with sarcoidosis and how urgently we need better treatments — and a cure. FSR CEO Mary McGowan joins the episode to explain what to expect and how YOU can take part. 🗣️ Event Date: October 28th, 10 AM - 3 PM EST 🎧 Listen now: https://loom.ly/8T4RX7U Sign up to join this crucial discussion: https://loom.ly/JTR3Oec #SarcFighterPodcast #Sarcoidosis #FDA #FSR #PatientAdvocacy #SarcoidosisAwareness #PFDD

This week, we honor the incredible respiratory therapists, pulmonologists, and healthcare professionals who work tirelessly to improve the lives of those affected by sarcoidosis. 🌟 Sarcoidosis can impact the lungs, making respiratory care an essential part of managing the disease. Thank you to all the respiratory care teams for your dedication and compassionate care! 💜 Learn more: www.stopsarcoidosis.org Join us in celebrating these healthcare heroes who are helping our community breathe easier and live better. 🫁💪 #RespiratoryCareWeek #SarcoidosisAwareness #ThankYou #BreatheEasier #FSRSupport

FSR is proud to partner with the Susan Pearlstine Sarcoidosis Center of Excellence at MUSC to offer the Sarcoidosis Health Plan Toolkit. This tool helps patients manage their care by tracking symptoms, medications, appointments, and more to help improve communication with clinicians. https://bit.ly/4cItHxY Download the toolkit today—no form required! 📋 #SarcoidosisSupport