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X-ORIGINAL-URL:https://old.hopeinfocus.org
X-WR-CALDESC:Events for Hope in Focus
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DTSTART:20160101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20180609
DTEND;VALUE=DATE:20180610
DTSTAMP:20260521T141858
CREATED:20180522T125346Z
LAST-MODIFIED:20180522T125346Z
UID:466-1528502400-1528588799@old.hopeinfocus.org
SUMMARY:Global Genes and EveryLife Foundation for Rare Diseases RARE on the Road Rare Disease Leadership Tours
DESCRIPTION:RARE on the Road brings critical education and insights to rare disease patients\, advocates and caregivers\, while collaborating in an interactive\, engaging environment. Topics include the Patients’ Role and Drug Development\, along with breakout sessions and hands-on workshops. \nJune 9 • Houston\, TX\nJune 30 • Salt Lake City\, UT\nJuly 21 • Nashville\, TN\nglobalgenes.org/rotr2018/
URL:https://old.hopeinfocus.org/event/global-genes-and-everylife-foundation-for-rare-diseases-rare-on-the-road-rare-disease-leadership-tours/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20180524T140000
DTEND;TZID=UTC:20180524T150000
DTSTAMP:20260521T141858
CREATED:20180503T123211Z
LAST-MODIFIED:20180503T123211Z
UID:458-1527170400-1527174000@old.hopeinfocus.org
SUMMARY:Webinar: Know Your Gene
DESCRIPTION:You or someone you know has LCA\, RP or some other rare retinal disease. But do you know what your genetic mutation is? Where to go for testing and how you can access free testing? How to work with a genetic counselor? Maybe you know the exact genetic mutation – but do you know what’s next? \nJoin Sofia Sees Hope founder Laura Manfre and guests Emily Place\, Licensed Genetic Counselor at Mass Eye & Ear\, and Dr. Brian Mansfield\, deputy chief research officer for Foundation Fighting Blindness\, live on May 24\, and we’ll try to answer all your questions! \nPlease register for “Know Your Gene: The Importance of Genetic Testing in Inherited Retinal Diseases” on May 24\, 2018 2:00 PM EDT at: \nhttps://attendee.gotowebinar.com/register/1028621005694949634 \nAfter registering\, you will receive a confirmation email containing information about joining the webinar. \nBrought to you by GoToWebinar®\nWebinars Made Easy®
URL:https://old.hopeinfocus.org/event/webinar-know-your-gene/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20180228T083000
DTEND;TZID=UTC:20180228T110000
DTSTAMP:20260521T141858
CREATED:20180131T135435Z
LAST-MODIFIED:20180131T135435Z
UID:335-1519806600-1519815600@old.hopeinfocus.org
SUMMARY:CT Rare Disease Day 2018
DESCRIPTION:Connecticut Rare Disease Day Advocacy Event \nFebruary 28\, 2018 at 8:30 am \nLegislative Office Building\, 300 Capitol Avenue\, Hartford\, CT 06106\nThe goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients\, caregivers\, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. \nEvent Host\nKristen Angell\nkangell@rarediseases.org \n 
URL:https://old.hopeinfocus.org/event/ct-rare-disease-day-2018/
LOCATION:CT Legislative Office Building\, 300 Capitol Avenue\, Hartford\, CT\, United States
ATTACH;FMTTYPE=image/png:https://old.hopeinfocus.org/wp-content/uploads/2018/01/rare-disease-day-logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20180227T130000
DTEND;TZID=UTC:20180227T150000
DTSTAMP:20260521T141858
CREATED:20180206T154336Z
LAST-MODIFIED:20180206T154336Z
UID:348-1519736400-1519743600@old.hopeinfocus.org
SUMMARY:2018 Rare Disease Day at Quinnipiac University
DESCRIPTION:Rare Disease Day is a global event when we raise awareness of some of the 7\,000 different rare diseases. Although each disease on its own is rare\, amazingly 1 in 10 Americans is living with a rare disease! The goal of RDD is to connect patients\, families\, caregivers\, and patient organizations; to provide opportunities for patients and parents to share their stories; and to promote education\, awareness\, and advocacy. \nSSH board member Shanda Easley and her daughter Helena\, who is currently seeking a clinical diagnosis for gradual vision loss\, will be in attendance. \nHeld in Room MNH 101 in the Frank H. Netter MD School of Medicine. \nPlease register in advance.
URL:https://old.hopeinfocus.org/event/2018-rare-disease-day-quinnipiac-university/
LOCATION:Frank H. Netter MD School of Medicine\, 370 Bassett Rd\, North Haven\, Connecticut\, 06473
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20171111T080000
DTEND;TZID=UTC:20171114T170000
DTSTAMP:20260521T141858
CREATED:20170427T125305Z
LAST-MODIFIED:20170427T125305Z
UID:65-1510387200-1510678800@old.hopeinfocus.org
SUMMARY:American Academy of Ophthalmology
DESCRIPTION:November 11-14\, New Orleans – American Academy of Ophthalmology\, thousands of people and very scientific https://www.aao.org/annual-meeting
URL:https://old.hopeinfocus.org/event/american-academy-of-ophthalmology/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20171016T080000
DTEND;TZID=UTC:20171017T170000
DTSTAMP:20260521T141858
CREATED:20170427T125234Z
LAST-MODIFIED:20170427T125234Z
UID:64-1508140800-1508259600@old.hopeinfocus.org
SUMMARY:National Organization for Rare Disorders (NORD)  annual Breakthrough Summit
DESCRIPTION:October 16-17\, Washington DC\, National Organization for Rare Disorders (NORD)  annual Breakthrough Summit – information about advocacy\, they have meetings for members\, might meet potential collaborators https://rarediseases.org/summit-overview/
URL:https://old.hopeinfocus.org/event/national-organization-for-rare-disorders-nord-annual-breakthrough-summit/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20171014T180000
DTEND;TZID=UTC:20171014T230000
DTSTAMP:20260521T141858
CREATED:20170427T125158Z
LAST-MODIFIED:20170518T180659Z
UID:63-1508004000-1508022000@old.hopeinfocus.org
SUMMARY:Dinner in the Dark
DESCRIPTION:October 14 – Dinner in the Dark \n[mk_button dimension=”flat” size=”medium” url=”https://old.hopeinfocus.org/get-involved/dinner-in-the-dark/”]LEARN MORE ABOUT THIS EVENT[/mk_button]
URL:https://old.hopeinfocus.org/event/dinner-in-the-dark/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20170914T080000
DTEND;TZID=UTC:20170915T170000
DTSTAMP:20260521T141858
CREATED:20170427T124945Z
LAST-MODIFIED:20170427T125105Z
UID:62-1505376000-1505494800@old.hopeinfocus.org
SUMMARY:Global Genes
DESCRIPTION:September 14-15\, Irvine\, California\, Global Genes – exclusively for rare disease advocacy groups \nhttp://globalgenes.cvent.com/events/2017-rare-patient-advocacy-summit/event-summary-b667f7db423b463f80ab2ef70b16b4a7.aspx
URL:https://old.hopeinfocus.org/event/global-genes/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20170811T080000
DTEND;TZID=UTC:20170815T170000
DTSTAMP:20260521T141858
CREATED:20170427T124912Z
LAST-MODIFIED:20170427T124912Z
UID:61-1502438400-1502816400@old.hopeinfocus.org
SUMMARY:American Society of Retina Specialists
DESCRIPTION:August 11-15\, Boston\, American Society of Retina Specialists – very relevant and specialized\, possibility of free day passes\, at least to the exhibit hall\, for nonprofit organizations https://www.asrs.org/annual-meeting
URL:https://old.hopeinfocus.org/event/american-society-of-retina-specialists/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20170524
DTEND;VALUE=DATE:20170619
DTSTAMP:20260521T141858
CREATED:20170524T193153Z
LAST-MODIFIED:20170525T170556Z
UID:151-1495584000-1497830399@old.hopeinfocus.org
SUMMARY:Support the LCA Community with Birdies for Charity!
DESCRIPTION:Sofia Sees Hope has joined The Travelers Championship PGA golf tournament’s Birdies for Charity program\, and we hope you will join us! Birdies for Charity is a pledge-based fundraiser. Sofia Sees Hope can earn donations based upon the number of birdies made during the 2017 Travelers Championship\, June 19-25\, 2017.  By pledging an amount per birdie\, you are helping to fund our mission of supporting the Leber congential amaurosis (LCA) and retinal disease community. \nIt’s fast and easy to pledge!  Just click here to make your pledge of an amount you’ll donate per birdie made during the course of the tournament.   With your help Sofia Sees Hope will also be eligible for additional Birdies for Charity funds through the Bonus Bucks program.  The bonus allows us to receive a 15% bonus on top of your  pledged donation. That’s 15% more funding for outreach\, education and awareness of Leber congenital amaurosis\, and for research to cure blindness caused by rare inherited retinal disease. \n \nAbout The Birdies for Charity program \nThe Birdies for Charity program provides 501(c)(3) organizations in Connecticut the opportunity to raise funds by collecting pledges based on the number of birdies made by PGA TOUR professionals during the tournament. At the conclusion of the tournament\, the Travelers Championship will multiply the number of birdies made by the pledged amounts\, and then will distribute invoices to each of our donors. For example\, if an individual makes a $.02 pledge and there are 1\,800 birdies made\, then that individual will be asked to make a donation of $36.00. The Travelers Championship will donate 100% of the proceeds to our organization. \n  \nHow Much Should I Pledge? \nBelow is a chart to show that shows how your per birdie pledge could grow.  It’s also possible to pledge a flat amount\, if you prefer.
URL:https://old.hopeinfocus.org/event/birdies-for-charity/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20170510T080000
DTEND;TZID=UTC:20170512T170000
DTSTAMP:20260521T141858
CREATED:20170427T124842Z
LAST-MODIFIED:20170427T124842Z
UID:60-1494403200-1494608400@old.hopeinfocus.org
SUMMARY:American Society of Gene and Cell Therapy
DESCRIPTION:Washington\, DC\, May 10-12\, American Society of Gene and Cell Therapy – very specific\, more corporate\, lots of therapy and research updates – they hold other events for advocacy groups\nhttp://www.asgct.org/meetings-educational-programs/asgct-annual-meetings/2017-annual-meeting
URL:https://old.hopeinfocus.org/event/american-society-of-gene-and-cell-therapy/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20170507T080000
DTEND;TZID=UTC:20170510T170000
DTSTAMP:20260521T141858
CREATED:20170427T124755Z
LAST-MODIFIED:20170427T124755Z
UID:59-1494144000-1494435600@old.hopeinfocus.org
SUMMARY:Association for Research in Vision and Ophthalmology (ARVO)
DESCRIPTION:May 7-10\, Baltimore\, Association for Research in Vision and Ophthalmology (ARVO) – thousands of doctors\, sessions are very scientific\, good opportunity to schedule networking meetings and connect with other vision-related nonprofit organizations http://www.arvo.org/AM/Default.aspx
URL:https://old.hopeinfocus.org/event/association-for-research-in-vision-and-ophthalmology-arvo/
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