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X-WR-CALDESC:Our annual conference will be held in Portland\, Maine this ye
 ar. Come join us for a great day of learning!\n\nRNE's mission is to bring
  together New England patients\, families and providers touched by rare an
 d complex disorders. We offer educational opportunities\, create awareness
  of available resources\, and build foundations for support to improve pat
 ient quality of life.\n\nThere will be a wide range of speakers covering t
 opics such as a review of diagnostic tools for rare diseases and what to e
 xpect from them\; the unique aspects of rare disease trials\, various sour
 ces of information about trials and the importance of clinical trials\; na
 vigating the school system with a rare disease\; advocating for your child
  in the health care setting managing a complex disease in a complex health
  system\, and much more!\n\nConference fees cover cost of Breakfast\, Lunc
 h and two snacks.\n\nA child watch will be available. There will be games 
 and other activities sure to keep the little ones entertained for the day!
 \n\nThere are limited patient/family scholarship opportunities for registr
 ation fees. Please complete form and send to Info@rarenewengland.org.\n\nF
 or more information on the event\, to review agenda\, or for an event flye
 r please visit our 2019 conference webpage\n\nConfirmed Speakers and Topic
 s\n\nRobert Burgess PhD\, Jackson Laboratory\, 'Rare Genetic Diseases: Mov
 ing Beyond Diagnosis to Treatments Using Gene Therapy'\n\nKaren Volle\, Ne
 w England Regional Genetics Network (NERGN)\, 'Genetic Education Material 
 for School Success'\n\nCarrie Woodcock\, Maine Parent Federation\, 'Advoca
 ting for Your Child with Special Health Care Needs'\n\nLeah Burke MD\, Cli
 nical Geneticist\, University of Vermont Medical Center\, 'Direct to Consu
 mer Testing in Genetics: The Good\, the Bad\, and the Ugly'\n\nRosemarie S
 mith MD\, Clinical Geneticist\, Maine Medical Center\, 'Telegenetics in Ma
 ine'\n\nMark Korson MD\, Clinical Geneticist\, Director of Physician Suppo
 rt and Director of Education at VMP Genetics\, Founding Board Member of RN
 E\, 'I teach but you teach better'\n\nJohn Campbell\, Clinical Development
  Director\, Pharma\, Founding Board Member at RNE\, 'Rare Disease Clinical
  Trials'\n\nLisa Deck\, Rare Disease Advocate and Patient\, 'Legislative T
 ips 101'\n\nPanel of Resources - John Novack\, Inspire: TBA\n\nInterested 
 to exhibit? Please contact Julie@rarenewengland for fees and info.
X-WR-RELCALID:97dd4c2509258cb6205c4cb3dcf423ba
X-WR-TIMEZONE:America/New_York
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DTSTART:20181104T020000
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
RDATE:20191103T020000
RDATE:20201101T020000
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DTSTART:20190310T020000
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BEGIN:VEVENT
UID:f5002be9-c0d5-4604-8dfd-3a1cf3b1f1d1
DTSTAMP:20260429T040731Z
DESCRIPTION:Our annual conference will be held in Portland\, Maine this yea
 r. Come join us for a great day of learning!\n\nRNE's mission is to bring 
 together New England patients\, families and providers touched by rare and
  complex disorders. We offer educational opportunities\, create awareness 
 of available resources\, and build foundations for support to improve pati
 ent quality of life.\n\nThere will be a wide range of speakers covering to
 pics such as a review of diagnostic tools for rare diseases and what to ex
 pect from them\; the unique aspects of rare disease trials\, various sourc
 es of information about trials and the importance of clinical trials\; nav
 igating the school system with a rare disease\; advocating for your child 
 in the health care setting managing a complex disease in a complex health 
 system\, and much more!\n\nConference fees cover cost of Breakfast\, Lunch
  and two snacks.\n\nA child watch will be available. There will be games a
 nd other activities sure to keep the little ones entertained for the day!
 \n\nThere are limited patient/family scholarship opportunities for registr
 ation fees. Please complete form and send to Info@rarenewengland.org.\n\nF
 or more information on the event\, to review agenda\, or for an event flye
 r please visit our 2019 conference webpage\n\nConfirmed Speakers and Topic
 s\n\nRobert Burgess PhD\, Jackson Laboratory\, 'Rare Genetic Diseases: Mov
 ing Beyond Diagnosis to Treatments Using Gene Therapy'\n\nKaren Volle\, Ne
 w England Regional Genetics Network (NERGN)\, 'Genetic Education Material 
 for School Success'\n\nCarrie Woodcock\, Maine Parent Federation\, 'Advoca
 ting for Your Child with Special Health Care Needs'\n\nLeah Burke MD\, Cli
 nical Geneticist\, University of Vermont Medical Center\, 'Direct to Consu
 mer Testing in Genetics: The Good\, the Bad\, and the Ugly'\n\nRosemarie S
 mith MD\, Clinical Geneticist\, Maine Medical Center\, 'Telegenetics in Ma
 ine'\n\nMark Korson MD\, Clinical Geneticist\, Director of Physician Suppo
 rt and Director of Education at VMP Genetics\, Founding Board Member of RN
 E\, 'I teach but you teach better'\n\nJohn Campbell\, Clinical Development
  Director\, Pharma\, Founding Board Member at RNE\, 'Rare Disease Clinical
  Trials'\n\nLisa Deck\, Rare Disease Advocate and Patient\, 'Legislative T
 ips 101'\n\nPanel of Resources - John Novack\, Inspire: TBA\n\nInterested 
 to exhibit? Please contact Julie@rarenewengland for fees and info.
DTSTART;TZID=America/New_York:20191026T080000
DTEND;TZID=America/New_York:20191026T170000
LOCATION:DoubleTree by Hilton  363 Maine Mall Road  South Portland\, ME 041
 06
SUMMARY:Improving Health Care Experiences in the Rare Disease Community
END:VEVENT
END:VCALENDAR