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)
Saturday agenda (8:30am or 9:00am to 3:00pm)
Meeting locations and schedule
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. |
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. |
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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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. |
The first post above includes two new dates:
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NORD has announced the speaker for the October 24-25 meeting in Westchester, New York.
The speacker will be Dr. Monica Bessler of Children’s Hospital of Philadelphia and the University of Pennsylvania. See the first post above for further information. |
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