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X-WR-CALDESC:Events for Rare Collective
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DTSTART:20160101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20190410T130000
DTEND;TZID=UTC:20190410T170000
DTSTAMP:20260418T200630
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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BEGIN:VEVENT
DTSTART;TZID=UTC:20190410T090000
DTEND;TZID=UTC:20190410T120000
DTSTAMP:20260418T200630
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20181003T063000
DTEND;TZID=UTC:20181004T220000
DTSTAMP:20260418T200630
CREATED:20180928T133052Z
LAST-MODIFIED:20180928T133052Z
UID:390-1538548200-1538690400@rarecollective.org
SUMMARY:Global Genes 2018 RARE Patient Advocacy Summit
DESCRIPTION:The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine\, California\, and is the largest gathering of rare disease patients\, advocates and thought leaders worldwide. \nTake advantage of this opportunity to connect and learn from more than 100 experts in rare disease leading educational sessions in four specialized learning tracks: \n\nLiving with a Life-Altering Condition\nArchitecting Your Disease Community\nPatients as Partners and Drivers\nScience and Technology Innovation\n\nThe RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Join Global Genes\, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!
URL:https://rarecollective.org/event/global-genes-2018-rare-patient-advocacy-summit/
LOCATION:Hotel Irvine\, 17900 Jamboree Road\, Irvine\, CA\, 92614\, United States
GEO:33.6777624;-117.8403925
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Hotel Irvine 17900 Jamboree Road Irvine CA 92614 United States;X-APPLE-RADIUS=500;X-TITLE=17900 Jamboree Road:geo:-117.8403925,33.6777624
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20170419T080000
DTEND;TZID=UTC:20170421T170000
DTSTAMP:20260418T200630
CREATED:20160912T004923Z
LAST-MODIFIED:20160912T004923Z
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SUMMARY:World Orphan Drug Congress USA
DESCRIPTION:
URL:https://rarecollective.org/event/world-orphan-drug-congress-usa/
LOCATION:Washington\, D.C.\, WA\, United States
CATEGORIES:Attending
GEO:47.7510741;-120.7401386
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20161208T070000
DTEND;TZID=UTC:20161208T183000
DTSTAMP:20260418T200630
CREATED:20161101T140551Z
LAST-MODIFIED:20161101T141534Z
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SUMMARY:Genetic RX Boston
DESCRIPTION:Genetic Rx will take place at Harvard Medical School and will bring together academics\, key industry leaders and investors to discuss the emergence of new genetic medicines as well as the treatment of patients with rare and ultra-rare genetic diseases.
URL:https://rarecollective.org/event/genetic-rx-boston/
LOCATION:Joseph B. Martin Conference Center\, 77 Avenue Louis Pasteur\, Boston\, MA\, 02115\, United States
GEO:42.338445;-71.103142
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Joseph B. Martin Conference Center 77 Avenue Louis Pasteur Boston MA 02115 United States;X-APPLE-RADIUS=500;X-TITLE=77 Avenue Louis Pasteur:geo:-71.103142,42.338445
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BEGIN:VEVENT
DTSTART;TZID=UTC:20161115T080000
DTEND;TZID=UTC:20161117T170000
DTSTAMP:20260418T200630
CREATED:20160912T004714Z
LAST-MODIFIED:20160912T004714Z
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SUMMARY:World Orphan Drug Congress Europe
DESCRIPTION:The World Orphan Drug Congress is entering into its 7th year in November 2016.\nThe Congress was one of the first events to bring together the full range of stakeholders and influencers in the orphan drug and rare disease sector\, from the pharma and biotechs to patient advocates and representatives from payers. \nIt continues to be a key meeting for the sector in pushing forward with strategy\, advocacy and partnering within the rare disease space.  \nBuilding on a greatly successful event in 2015\, we will be putting together a hard-hitting agenda in 2016. \nWe will continue to cover the issues that affect the full audience\, including pricing and reimbursement\, commercialisation\, and improving on collaboration\, as well as researching the newest areas to ensure the focussed content really reflects the future of the sector.  \nWe will also be working hard to increase the number of representatives present from the HTA\, payer and public health arenas\, as it is so important to have their input throughout the discussions onsite. Additionally\, we will be inviting more members of the patient advocacy community. \nWe believe these improvements to the programme will fulfil our aim to see 450+ attendees in 2016.
URL:https://rarecollective.org/event/world-orphan-drug-congress-europe/
LOCATION:Sheraton Brussels Airport Hotel\, 1930 Brussels\, Brussels\, Belgium
CATEGORIES:Attending
GEO:50.8795024;4.4826212
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20161027T080000
DTEND;TZID=UTC:20161028T170000
DTSTAMP:20260418T200630
CREATED:20161012T165918Z
LAST-MODIFIED:20161012T165918Z
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SUMMARY:World Congress on Patient Advocacy
DESCRIPTION:Pharmaceutical and biotech companies all believe in representing the patient voice within the company.\nThe challenge is how to make patient centricity an actuality within your organization. The paradigm shift in the healthcare industry to have a greater focus on the patient voice has created a need for industry organizations to ramp up their patient advocacy efforts to more successfully engage and empower what is most important; the patient. This summit brings together manufacturer and advocacy professionals to discuss how to most effectively engage the patient in drug development\, how to create successful partnerships\, and discusses strategies and results from successful case examples. \nTop Reasons To Attend: \n\n2015 Attendance Pie Chart\nDiscuss innovative tactics for involving patients from the initial stages of drug development through study launch\nDiscover how to translate a volunteer network into your organization’s stakeholder groups\nUnderstand the impact of ePatient communities on clinical trial participation\nDetermine how to more effectively capture the patient voice in policy\nLearn how to work in partnership with global patient advocates\nShow how to clarify your role to internal stakeholders when building an advocacy function\nDemonstrate how data transparency can help build trust and confidence in patients participating in clinical trials\nIdentify how to work in partnership with global patient advocates
URL:https://rarecollective.org/event/world-congress-patient-advocacy/
LOCATION:Hyatt Arlington\, 1325 Wilson Blvd\, Arlington\, VA\, 22209\, United States
CATEGORIES:Attending
GEO:38.8951425;-77.0727915
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Hyatt Arlington 1325 Wilson Blvd Arlington VA 22209 United States;X-APPLE-RADIUS=500;X-TITLE=1325 Wilson Blvd:geo:-77.0727915,38.8951425
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20161017
DTEND;VALUE=DATE:20161019
DTSTAMP:20260418T200630
CREATED:20160912T004242Z
LAST-MODIFIED:20160912T004242Z
UID:83-1476662400-1476835199@rarecollective.org
SUMMARY:NORD Rare Summit
DESCRIPTION:Rare Diseases and Orphan Products Breakthrough Summit\nNORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multi-stakeholder event of its kind – historically featuring over 20 speakers from the FDA\, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product innovation\, investment and commercialization. \nThe 2016 Breakthrough Summit is your opportunity to collaborate with the top leaders from the FDA\, NIH\, industry\, patient groups\, payers and research institutions to address the progress and innovations in rare disease diagnosis\, treatment\, patient engagement and market access of orphan products. \nNew for 2016 \nNORD’s Conference networking app helps you and your colleagues see who’s attending and schedule one-on-one meetings in advance.  Plus\, roundtable discussions during Lunch & Learn sessions create opportunities for robust\, intimate discussions.
URL:https://rarecollective.org/event/nord-rare-summit/
LOCATION:Hyatt Regency Crystal City\, 2799 Jefferson Davis Hwy\, Arlington\, VA\, United States
CATEGORIES:Attending
GEO:38.8487231;-77.0516672
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20160929
DTEND;VALUE=DATE:20161001
DTSTAMP:20260418T200630
CREATED:20160906T183659Z
LAST-MODIFIED:20160908T171416Z
UID:76-1475107200-1475279999@rarecollective.org
SUMMARY:Rare Disease Market Access and Orphan Drug Commercialization
DESCRIPTION:Join market access and commercialization executives from pharmaceutical and biotech companies with a focus on rare\, genetic\, and orphan diseases to explore the current commercial dynamics surrounding these unique products. This Summit evaluates market forces\, their economic impact\, and the implications for orphan drug market access – covering early stage commercialization efforts through pricing\, reimbursement\, and patient and market access considerations. \nTop Reasons to Attend: \n\nLearn strategies to enhance your patient-centered approach to product commercialization\nDiscuss lessons learned between industry and advocacy partnerships\nUnderstand key pricing models and how to develop a cost effectiveness model for your product\nGain insight from payers on how they manage orphan drug pricing and reimbursement and their perceptions on value in relation to price\nDive into the mechanics of lobbying in the rare disease space\nDetermine how to choose the right distribution model for market success
URL:https://rarecollective.org/event/rare-disease-market-access-and-orphan-drug-commercialization/
LOCATION:Hyatt Regency Boston\, 1 Ave de Lafayette\, Boston\, MA\, 02111\, United States
CATEGORIES:Attending
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20160922T070000
DTEND;TZID=UTC:20160923T170000
DTSTAMP:20260418T200630
CREATED:20160906T153048Z
LAST-MODIFIED:20160908T171349Z
UID:67-1474527600-1474650000@rarecollective.org
SUMMARY:Global Genes 5th Annual RARE Patient Advocacy Summit
DESCRIPTION:A rare diagnosis changes everything. You weren’t given a playbook on how to cope\, how to take that next step\, and you certainly weren’t handed a blueprint on how to build an advocacy organization and successfully bring a therapy to market. The good news is that rare disease advocates are some of the most inspiring\, innovative activists on the planet\, and Global Genes is works to bring the community together to share best practices\, create important introductions\, and help catalyze powerful collaborations. \nThis is why Global Genes’ would like to invite you to join The Fifth Annual RARE Patient Advocacy Summit on September 22 – 23\, 2016 in Huntington Beach\, California! The goal of this year’s RARE Patient Advocacy Summit is for patients\, caregivers\, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed\, are building a disease community\, thinking about funding early research\, actively engaged in developing a treatment\, or have been advocating in rare disease for decades. \nHere’s what you’ll learn:\nPractical next steps for taking action in the areas of research\, legislation\, fundraising\, and community support. Core fundamentals and skills to help you start\, grow and strengthen your nonprofit organization. Strategies for building online communities and why they are essential for rare disease awareness. Understanding the power of genetic data and patient involvement for advancing research for your disease. Tools and insights into crafting successful collaborations with researchers\, biotech\, pharma and the FDA. Invaluable connections with advocacy leaders that will help you define and propel your rare disease priorities forward. Be prepared – the Summit will educate you and will exhaust you\, but. . . it will also inspire you.
URL:https://rarecollective.org/event/global-genes-5th-annual-rare-patient-advocacy-summit/
LOCATION:Hyatt Regency Huntington Beach Resort and Spa\, 21500 Pacific Coast Highway\, Huntington Beach\, CA\, 92648\, United States
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