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DTSTART;TZID=America/Los_Angeles:20230329T100000
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UID:37834-1680084000-1680087600@solvecfs.org
SUMMARY:CDC Update: Recent Strides in Long Covid
DESCRIPTION:In this webinar\, Solve M.E. President Oved Amitay welcomes Dr. Elizabeth Unger\, chief of Chronic Viral Diseases Branch at Centers for Disease Control and Prevention\, and her CDC colleagues to share updates and progress on The School-Based Active Surveillance Project (presented by Anindita Nanda Issa\, MD)\, the Long Covid Fatiguing Illness Recovery Program (ECHO) (presented by Jennifer Cope\, MD\, MPH)\, and initial findings from the Multi-site Study of Post-COVID conditions (Medical chart abstraction project) (presented by Miriam Nji\, MD\, MPH). \nRegister here.
URL:https://solvecfs.org/event/cdc-update-recent-strides-in-long-covid/
LOCATION:Online
CATEGORIES:Long Covid,Webinar
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/02/CDC-Webinar-Updated-Graphic.png
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DTSTART;TZID=America/Los_Angeles:20230330T110000
DTEND;TZID=America/Los_Angeles:20230330T120000
DTSTAMP:20230321T200001Z
CREATED:20230316T000937Z
LAST-MODIFIED:20230321T200001Z
UID:38021-1680174000-1680177600@solvecfs.org
SUMMARY:How to Make an Impact at the FDA's Drug Development Meeting for Long Covid
DESCRIPTION:On April 25th\, 2023\, FDA is hosting a virtual public meeting on Patient-Focused Drug Development (PFDD) for Long Covid. This meeting will provide FDA the opportunity to obtain initial patient and patient representative input on the aspects of Long Covid\, including how Long COVID affects their daily life\, the symptoms that matter most to patients\, their current approaches to treating Long Covid\, and what they consider when determining whether or not to participate in a clinical trial. \n\n\n\n\nAhead of the FDA’s PFDD for Long Covid\, Solve M.E. will host a webinar on March 30th from 11- 12 pm PT / 2-3pm ET to help educate our community about this important event. \nThis is a unique opportunity to share stories of living with Long Covid\, as well as experiences with treatments\, with important decision-makers at the FDA. Though Solve is not involved in the planning of the PFDD meeting\, we have invited two former FDA officials who are experts in this area to help prepare our community for this important day. \n\nJames Valentine\, JD\, MHS\, has worked the last 15 years as a champion for the patient voice as part of the regulatory process.  James previously worked at the FDA where he was a patient liaison\, helping to incorporate the patient voice into medical product review across the FDA’s various medical product centers and review divisions.  There\, he helped to develop and launch the Patient-Focused Drug Development initiative.\nLarry Bauer\, RN\, MS\, worked at the NIH for 17 years in clinical research\, followed by a position at the FDA as a Regulatory Scientist in the Center for Drug Evaluation and Research’s Rare Diseases Program\, a group he co-founded and worked for 10 years\, where he advanced rare disease drug development. In private practice\, James and Larry have worked with many patient organizations to ensure their community’s voices were heard by decision-makers.  Relevant to the upcoming PFDD meeting\, both Larry and James were involved in these FDA-led PFDD meetings in their time at the Agency\, and since leaving have been a resource to the majority of patient communities participating in FDA’s sister externally-led PFDD program.\n\nThe hoped outcome of the meeting is to improve the development of new drugs in the research pipeline and inform the context in which regulatory decisions will be made for new drugs for Long Covid. \nDuring the webinar on March 30th\, we will be covering the following topics: \n\nBackground on FDA & Drug Development\nIntroduction to Patient-Focused Drug Development & Role of Patient Voice\nOverview of the PFDD Meeting\nGuide to Participating in the Meeting\nLogistics\, Format\, & Tips\n\nIt doesn’t matter where you live or where you are in your journey\, what matters is your story. \nRegister here.
URL:https://solvecfs.org/event/how-to-make-an-impact-at-the-fdas-drug-development-meeting-for-long-covid/
LOCATION:Online
CATEGORIES:Long Covid,Webinar
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/03/Webinars-2.png
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DTSTART;TZID=America/Los_Angeles:20230331T120000
DTEND;TZID=America/Los_Angeles:20230331T130000
DTSTAMP:20230323T232540Z
CREATED:20230323T232540Z
LAST-MODIFIED:20230323T232540Z
UID:38081-1680264000-1680267600@solvecfs.org
SUMMARY:March Advocacy Cafe Chat
DESCRIPTION:During Advocacy Month 2022\, we premiered a new series spotlighting the voices of several standout members of our community as they inspired us with their stories\, advocated for change\, and answered your questions. This series — Advocacy Cafe — became a community favorite\, and we’re excited to announce that we will continue hosting more throughout 2023. \nJoin us the last Friday of the month at 12 pm PT/ 3 pm ET as we bring you more stories\, inspiration\, and conversations. No registration required- join here.
URL:https://solvecfs.org/event/march-advocacy-cafe-chat/
LOCATION:Online
CATEGORIES:Advocacy Week 2023
ATTACH;FMTTYPE=image/png:https://solvecfs.org/wp-content/uploads/2023/01/Advocacy-Cafe.png
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