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
Speaker:Dr. Monica Bessler
Children’s Hospital of Philadelphia and University of Pennsylvania
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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