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  #1  
Old Sun Dec 29, 2013, 01:25 AM
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NORD to Hold 14 PNH Patient and Family Meetings in 2014

The National Organization for Rare Disorders will hold 14 free one-day meetings for PNH patients and their families in 2014.

Attendees at each meeting will hear from and talk to leading PNH experts, gain a better understanding of PNH, get help coping with the effects of their illness, meet other patients, and share personal experiences.

Meetings will take place from 8:30 or 9:00am to 3:00pm. Breakfast and lunch are included. After the meeting, a small stipend will be mailed to each patient to help cover travel expenses. Some meetings have a buffet reception the night before.

You can register online. To RSVP for any meeting, email Ms. Susan Olivo at NORD or phone her at 203-744-0100, ext. 232.

If you plan to attend one of these meetings, post in this thread to let other attendees know to look for you!

After the meeting, let us know what you thought of the event.



Friday agenda (two-day meetings only)
  • Buffet reception, 7:00 to 9:00pm

Saturday agenda (8:30am or 9:00am to 3:00pm)
  • Welcome & Introduction

  • Support Meeting with PNH Expert

  • Lunch

  • PNH Research & Support Foundation

  • Breakout Sessions

  • Closing Remarks

Meeting locations and schedule
  • Orlando, Florida - Friday/Saturday February 7-8, 2014
    Speaker:
    Dr. Jack Goldberg
    Penn Presbyterian Medical Center
    Location:
    Renaissance Orlando at Sea World
    6677 Sea Harbor Drive, Orlando, FL 32821
  • San Antonio, Texas - Friday/Saturday February 28-March 1, 2014
    Speaker:
    Dr. Ramon Tiu
    Cleveland Clinic
    Location:
    Hyatt Regency San Antonio
    123 Losoya Street, San Antonio, TX 78205
    Please RSVP by Wednesday, February 19, 2014.
  • Baltimore, Maryland - Friday/Saturday March 14-15, 2014
    Speaker:
    Dr. Monica Bessler
    Children’s Hospital of Pennsylvania and University of Pennsylvania
    Location:
    Baltimore Marriott Inner Harbor at Camden Yards
    110 South Eutaw Street, Baltimore, MD 21201
    Please RSVP by Monday, March 3, 2014.
  • Providence, Rhode Island - Friday/Saturday April 11-12, 2014
    Speaker:
    Dr. Charles M. Farber
    Morristown Medical Center, NJ
    Location:
    Providence Marriott Downtown
    One Orms Street, Providence, RI 02904
    Please RSVP by Tuesday, April 1, 2014.
  • Raleigh, North Carolina - Friday/Saturday May 9-10, 2014
    Speaker:
    Dr. Carlos M. de Castro
    Duke University Medical Center
    Location:
    Embassy Suites Raleigh-Durham Airport/Brier Creek
    8001 Arco Corporate Drive, Raleigh, NC 27617
    Please RSVP by Wednesday, April 30, 2014.
  • Seattle, Washington - Friday/Saturday May 16-17, 2014 - date changed
    Speaker:
    Dr. William P. Hammond
    University of Washington
    Location:
    The Westin Seattle
    1900 5th Avenue, Seattle, WA 98101
    Please RSVP by Friday, May 2, 2014.
  • Denver, Colorado - Friday/Saturday June 20-21, 2014

  • Los Angeles, California - Saturday July 12, 2014 - new
    Location:
    McCormick & Schmick's Restaurant
    400 S Hope Street, Los Angeles, CA 90071 (Google map)
  • New York, New York - Saturday July 19, 2014
    Location:
    Morton's The Steakhouse
    551 5th Avenue, New York City, NY 10017
  • Baltimore, Maryland - Saturday September 6, 2014
    Location:
    Rusty Scupper Restaurant
    402 Key Highway, Inner Harbor Marina, Baltimore, MD 21230
  • Chicago, Illinois - Friday/Saturday September 12-13, 2014 - new
    Speaker:
    Dr. Jack Goldberg
    Penn Presbyterian Medical Center
    Location:
    Hotel Monaco
    225 North Wabash Avenue, Chicago, IL 60601 (Google map)
    Please RSVP by Friday, August 22, 2014.
  • Westchester, New York - Friday/Saturday October 24-25
    Location:
    Westchester Marriott
    670 White Plains Road, Tarrytown, NY 10591
  • Chicago, Illinois - Saturday November 1, 2014 - date changed
    Location:
    McCormick & Schmick's Restaurant
    1 East Upper Wacker Drive, Chicago, IL
  • San Diego, California - Friday/Saturday November 14-15
    Location:
    Kona Kai Resort & Marina
    1551 Shelter Island Drive, San Diego, CA 92106


See also the NORD PNH Regional Meetings page.

NORD, the National Organization for Rare Disorders, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
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Old Wed Feb 5, 2014, 01:31 AM
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Details for the San Antonio TX meeting on Friday/Saturday February 28-March 1, 2014 and the Baltimore MD meeting on Friday/Saturday March 14-15, 2014 are now available.

See the post above for details.
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Old Sat May 10, 2014, 06:14 PM
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The date of the Seattle, Washington Patient and Family Meeting has been changed to Friday/Saturday May 16-17, 2014. See the details above.
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Old Sun Jun 1, 2014, 05:51 PM
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The date of the Chicago, Illinois meeting has been changed to Saturday November 1, 2014.

New meetings have been scheduled for New York, New York on July 19, 2014 and for Los Angeles, California on September 6, 2014.

See the details above.
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Old Wed Jul 9, 2014, 01:39 AM
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The first post above includes two new dates:
  • Saturday July 12, 2014 in Los Angeles, California

  • Friday/Saturday September 12-13, 2014 in Chicago, Illinois
Also added: locations for all upcoming 2014 meetings and a link for online registration.
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