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Old Sat Mar 7, 2015, 01:35 AM
Marrowforums Marrowforums is offline
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NORD to Hold 18 PNH Patient and Family Meetings in 2015

The National Organization for Rare Disorders (*) will hold 18 free one-day meetings for PNH patients and their families in 2015.

Patients, caregivers, and families affected by PNH are invited to participate. You'll meet other patients and speak with a medical expert. You can come together in a small group and gain the encouragement and hope that comes from meeting face-to-face with other PNH patients. Everyone will be able to share personal experiences with each other, gain a better understanding of this rare disease, and help others cope with the effects of their illness.

Breakfast and lunch are included. Two-day meetings have a buffet reception the night before.

All patients will receive a $75.00 travel stipend and one night hotel accommodations.

To RSVP for any meeting or for more information, contact Ms. Susan Olivo at NORD.

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

Saturday agenda (all meetings, from 8:30am or 9:00am to 3:00pm or 4:00pm)
  • Welcome & Introduction

  • Support Meeting with PNH Expert

  • Lunch

  • PNH Research & Support Foundation

  • Breakout Sessions

  • Closing Remarks

See the next post for the list of cities and dates. See also the NORD Regional Patient Meetings page.

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.


* 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 Sat Mar 7, 2015, 01:37 AM
Marrowforums Marrowforums is offline
Join Date: Jul 2006
Posts: 909
NORD PNH Patient Meetings: Locations and Schedule

Click the link for details and registration. We'll update this page as more links become available.
  • Seattle, Washington - Friday/Saturday March 13-14, 2015
    Grand Hyatt Seattle
    721 Pine Street, Seattle, WA 98101
  • Orlando, Florida - Friday/Saturday March 27-28, 2015
    Hilton Orlando Lake Buena Vista
    1751 Hotel Plaza Boulevard, Lake Buena Vista, FL 32830
  • St. Louis, Missouri - Saturday April 25, 2015
    Morton's The Steakhouse -- Clayton
    7822 Bonhomme Avenue, Clayton, MO 63105
  • Denver, Colorado - Saturday May 16, 2015
    The Brown Palace Hotel
    321 17th Street, Denver, CO 80202
  • Philadelphia, Pennsylvania - Friday/Saturday May 29-30, 2015
    Sonesta Philadelphia
    1800 Market Street, Philadelphia, PA 19103
  • Minneapolis, Minnesota - Saturday June 6, 2015
    The Oceanaire Seafood Room
    50 South Sixth Street, Minneapolis, MN 55402
  • Durham, North Carolina - Saturday June 13, 2015
    Ruth's Chris Steakhouse
    7007 Fayetteville Street, Durham, NC 27713
  • Teaneck, New Jersey - Friday/Saturday June 26-27, 2015
    Teaneck Marriott at Glenpointe
    100 Frank W Burr Blvd., Teaneck, NJ 07666
  • Mobile, Alabama - Friday/Saturday July 24-25, 2015
    The Battle House Hotel
    26 North Royal Street, Mobile, AL 36602
  • Sacramento, California - Saturday September 12, 2015

  • Chicago, Illinois - Friday/Saturday September 18-19, 2015

  • Omaha, Nebraska - Friday/Saturday September 26, 2015

  • Dallas, Texas - Saturday October 3, 2015

  • Anaheim, California - Friday/Saturday October 16-17, 2015

  • Chandler, Arizona - Friday/Saturday October 30-31, 2015

  • Detroit, Michigan - Saturday November 7, 2015

  • Cleveland, Ohio - Friday/Saturday November 20-21, 2015

  • San Antonio, Texas - Friday/Saturday December 4-5, 2015
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