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X-WR-CALDESC:***PLEASE BRING YOUR LAPTOP OR TABLET\, IF POSSIBLE\, SO YOU C
 AN BEGIN THE REGISTRY PROCESS ON SITE***\n\n***Please note that this prese
 ntation is being held in Mammel Hall\, located near Aksarben Village\, on 
 UNO's Pacific Street campus.  See the map below for directions and help wi
 th parking.  You will need to print out the ePermit below in order to park
  on campus.  Vehicles must park in white painted stalls.  Vehicles are sub
 ject to ticketing if parked in Reserved or Handicap Stalls (unless display
 ing a valid handicap permit)\, drive aisles or fire lanes.***\n\nThe Down 
 Syndrome Education Series (DSES) is a monthly educational seminar for fami
 lies of children with Down syndrome\, designed to connect parents with inf
 ormation that will positively impact the education and well-being of their
  child.\n\nMelissa Parisi\, M.D.\, Ph.D.\, from the National Institute of 
 Child Health and Human Development will explain what DS-Connect™: The Down
  Syndrome Registry is all about\, how it will benefit your family\, and ho
 w important it is to the Down syndrome community.  Participants will then 
 be able to start the registry process on their own devices and have any qu
 estions they may have along the way answered by Dr. Parisi.\n\nWhat is DS-
 Connect™: The Down Syndrome Registry?\n\nThe NIH-supported Down Syndrome R
 egistry\, DS Connect™\, will allow people with Down syndrome and their fam
 ily members\, researchers\, and parent and support groups to share informa
 tion and health history in a safe\, confidential\, online database. Users 
 will be able to create and edit their customizable online profiles\, share
  their profiles with other DS Connect™ users\, and set reminders for medic
 al care and other appointments and events. DS Connect™ will also provide a
 ccess to general information about Down syndrome\, as well as de-identifie
 d statistical data based on user responses to survey questions.\n\nWhen wi
 ll DS-Connect™ be available?\n\nDS Connect™ was launched in September 2013
 .\n\nWho can access DS-Connect™?\n\nThose with Down syndrome and their fam
 ilies will need to provide their consent for the Registry before they can 
 create their password-protected profiles. If a user gives permission to be
  contacted\, then clinicians and researchers who are authorized will conta
 ct these individuals to see if they are interested in participating in res
 earch studies. The Registry will comply with all regulations and laws gove
 rning privacy\, personally identifiable information\, and health data.\n\n
 Why do we need DS-Connect™?\n\nCreating a national registry was a primary 
 recommendation of the 2007 NIH Down Syndrome Research Plan\, which helped 
 set goals and objectives for the Down syndrome research field. The develop
 ment of DS Connect™ was also supported by the Down Syndrome Consortium\, a
  public-private partnership established in 2011 to further the exchange of
  information on Down syndrome research and to implement and update the Res
 earch Plan.\n\n***Childcare is not provided.  With the exception of infant
 s\, we request that you refrain from bringing children to this event.
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DTSTART:20141102T020000
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
RDATE:20151101T020000
RDATE:20161106T020000
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DTSTART:20150308T020000
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BEGIN:VEVENT
UID:4aa1c121-a993-491b-8a7b-be41b5257a95
DTSTAMP:20260504T153616Z
DESCRIPTION:***PLEASE BRING YOUR LAPTOP OR TABLET\, IF POSSIBLE\, SO YOU CA
 N BEGIN THE REGISTRY PROCESS ON SITE***\n\n***Please note that this presen
 tation is being held in Mammel Hall\, located near Aksarben Village\, on U
 NO's Pacific Street campus.  See the map below for directions and help wit
 h parking.  You will need to print out the ePermit below in order to park 
 on campus.  Vehicles must park in white painted stalls.  Vehicles are subj
 ect to ticketing if parked in Reserved or Handicap Stalls (unless displayi
 ng a valid handicap permit)\, drive aisles or fire lanes.***\n\nThe Down S
 yndrome Education Series (DSES) is a monthly educational seminar for famil
 ies of children with Down syndrome\, designed to connect parents with info
 rmation that will positively impact the education and well-being of their 
 child.\n\nMelissa Parisi\, M.D.\, Ph.D.\, from the National Institute of C
 hild Health and Human Development will explain what DS-Connect™: The Down 
 Syndrome Registry is all about\, how it will benefit your family\, and how
  important it is to the Down syndrome community.  Participants will then b
 e able to start the registry process on their own devices and have any que
 stions they may have along the way answered by Dr. Parisi.\n\nWhat is DS-C
 onnect™: The Down Syndrome Registry?\n\nThe NIH-supported Down Syndrome Re
 gistry\, DS Connect™\, will allow people with Down syndrome and their fami
 ly members\, researchers\, and parent and support groups to share informat
 ion and health history in a safe\, confidential\, online database. Users w
 ill be able to create and edit their customizable online profiles\, share 
 their profiles with other DS Connect™ users\, and set reminders for medica
 l care and other appointments and events. DS Connect™ will also provide ac
 cess to general information about Down syndrome\, as well as de-identified
  statistical data based on user responses to survey questions.\n\nWhen wil
 l DS-Connect™ be available?\n\nDS Connect™ was launched in September 2013.
 \n\nWho can access DS-Connect™?\n\nThose with Down syndrome and their fami
 lies will need to provide their consent for the Registry before they can c
 reate their password-protected profiles. If a user gives permission to be 
 contacted\, then clinicians and researchers who are authorized will contac
 t these individuals to see if they are interested in participating in rese
 arch studies. The Registry will comply with all regulations and laws gover
 ning privacy\, personally identifiable information\, and health data.\n\nW
 hy do we need DS-Connect™?\n\nCreating a national registry was a primary r
 ecommendation of the 2007 NIH Down Syndrome Research Plan\, which helped s
 et goals and objectives for the Down syndrome research field. The developm
 ent of DS Connect™ was also supported by the Down Syndrome Consortium\, a 
 public-private partnership established in 2011 to further the exchange of 
 information on Down syndrome research and to implement and update the Rese
 arch Plan.\n\n***Childcare is not provided.  With the exception of infants
 \, we request that you refrain from bringing children to this event.
DTSTART;TZID=America/Chicago:20150519T183000
DTEND;TZID=America/Chicago:20150519T200000
LOCATION:UNO Mammel Hall Room 122 (Pacific Street Campus)
SUMMARY:Parent DSES - DS-Connect™: The Down Syndrome Registry
END:VEVENT
END:VCALENDAR