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X-WR-CALDESC:Events for Rare Collective
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DTSTART:20190101T000000
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DTSTART;TZID=UTC:20190410T130000
DTEND;TZID=UTC:20190410T170000
DTSTAMP:20260420T152741
CREATED:20190305T132254Z
LAST-MODIFIED:20190305T132254Z
UID:430-1554901200-1554915600@rarecollective.org
SUMMARY:MME and LapidusData to Lead Workshop at WODC
DESCRIPTION:On Wednesday\, April 10\, 2019\, MME and LapidusData will host a workshop on Predicting and Influencing the Market Potential of Orphan Drugs and Gene Therapies as part of the World Orphan Drug Congress. \nMarket forecasting presents special challenges for orphan drugs and gene therapies. This workshop will provide real-world examples of how epidemiology\, pricing\, and early clinical decisions can inform your forecast\, and more importantly\, how you can influence these factors to achieve commercial success. Our unparalleled experience with rare diseases allows us to share cases of winning—and losing—strategies for market sizing\, pricing/reimbursement\, trial design\, and even product formulation. Topics will include: \n\nMarket potential: Defining the treatable population\nKey drivers: Assessing prevalence\, diagnosis rates\, and disease severity.  What resources can provide reliable information\, and how can you generate new data when faced with unknowns?\nPredicting performance: Leveraging historical product analogs\, prioritizing multiple indications\, and understanding the value of early product formulation\nMarket share: How to think about unmet need and competition for orphan drugs\nPrice: How to assess and capture the value offered by your product.  What novel reimbursement mechanisms are viable?\nQ&A\n\nThe World Orphan Drug Congress will place April 10–12\, 2019 at the Gaylord National Harbor Hotel in Oxon Hill\, MD.
URL:https://rarecollective.org/event/engage-health-to-appear-at-the-world-orphan-drug-congress-usa-2019-2/
LOCATION:Gaylord National Harbor Hotel\, 201 Waterfront St\, National Harbor\, MD\, 20745\, United States
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DTSTART;TZID=UTC:20190410T090000
DTEND;TZID=UTC:20190410T120000
DTSTAMP:20260420T152741
CREATED:20190220T191252Z
LAST-MODIFIED:20190220T191252Z
UID:422-1554886800-1554897600@rarecollective.org
SUMMARY:Engage Health to Appear at the World Orphan Drug Congress USA 2019
DESCRIPTION:On Wednesday\, April 10\, 2019\, Engage Health will host a workshop on Identifying and Engaging Patients and Clinicians in the Rare Disease Space as part of the World Orphan Drug Congress. Anyone in the rare disease space who has ever needed to find patients with rare diseases or the clinicians who care for them\, will benefit from attending! \nA complete description of the workshop is below. In order to attend our workshop\, you must purchase the three day pass (conference and workshop day) when you register for the World Orphan Drug Congress. \nIdentifying and Engaging Patients and Clinicians in the Rare Disease Space \nHas the experience of searching for patients with rare diseases\, or for the health care providers who care for them\, caused you to feel like you were looking for the proverbial needle in a haystack? If so\, then this workshop is for you! \nAdvancing therapies for rare diseases requires a strong community comprised of patients\, patient organizations\, pharmaceutical companies and health care providers. Introducing new patients to the rare disease community is challenging. To begin with\, the path to diagnosis is difficult\, somethings taking as long as 9 years\, and often involving an average of 7.3 specialists1. Once diagnosed\, some families join a patient organization. Others become advocates at the state and national level. Some turn their pain into action by founding patient organizations for diseases that have none. Patients and their families who engage in these activities become part of the small but mighty rare disease community. \nWhen a new therapy or a clinical trial is available\, patients who are already part of the rare disease community are relatively easy to reach. But what about the ones who do not know there is a rare disease community? What about those who know but do not seek out community involvement?  What about those who are lost to expert follow up? Many patients and their families obtain a diagnosis\, are told there is nothing to be done\, and are sent home to be cared for by their local health care provider. How do we find these patients? How do we find the health care providers who are treating them? How do we reach them with potentially life-saving or life-improving therapies before it is too late? \nHosted by Engage Health\, Inc.\, this three-hour workshop will introduce new tools to engage patients and clinicians at every stage of drug development.  Together we can find those needles in that haystack and speed the development of life-improving and life-saving therapies. Together we can make a difference to the patients and families impacted by rare diseases. \n1 Engel PA\, Bagal S\, Broback M\, Boice N. PHYSICIAN AND PATIENT PERCEPTIONS REGARDING PHYSICIAN TRAINING IN RARE DISEASES : THE NEED FOR STRONGER EDUCATIONAL INITIATIVES FOR PHYSICIANS. J Rare Disord. 2013;1(2):1-15. http://www.journalofraredisorders.com/pub/IssuePDFs/Engel.pdf. Accessed December 13\, 2018.  \nFor additional information about the workshop click HERE. You may also contact Engage Health at 651-994-0510. \nThe World Orphan Drug Congress will place April 10–12\, 2019 at the Gaylord National Harbor Hotel in Oxon Hill\, MD.
URL:https://rarecollective.org/event/engage-health-to-appear-at-the-world-orphan-drug-congress-usa-2019/
LOCATION:Gaylord National Harbor Hotel\, 201 Waterfront St\, National Harbor\, MD\, 20745\, United States
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