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Thu May 2, 2013, 11:44 AM
The National Organization for Rare Disorders (www.rarediseases.org) will hold 6 free one-day meetings for PNH patients and their families in 2013. 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.
To RSVP for any meeting, email Ms. Susan Olivo (solivo@rarediseases.org) 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.
Meeting agenda
Welcome & Introduction
Support Meeting with PNH Expert Lunch
PNH Research & Support Foundation Breakout Sessions
There will be a reception from 7:00-9:00pm the night before each meeting.
Meeting locations and schedule
Raleigh, North Carolina - Saturday May 4, 2013, 8:30am - 3:00pm
Speaker: Dr. Jack Goldberg
Presbyterian Medical Center
Location:
Renaissance Raleigh North Hills (http://www.marriott.com/hotels/travel/rdurn-renaissance-raleigh-north-hills-hotel/)
4100 Main at North Hills Street, Raleigh, NC 27609 (Google map (http://maps.google.com/maps?q=4100+Main+at+North+Hills+Street,+Raleigh,+NC+(Renaissance+Raleigh+North+Hills)&hl=en&ll=35.835907,-78.643827&spn=0.066451,0.063858&sll=34.020479,-118.411732&sspn=1.086995,1.021729&hnear=4100+Main+at+North+Hills+St,+Raleigh,+Wake,+North+Carolina+27609&t=m&z=14))
Portland, Oregon - Saturday June 8, 2013, 9:00am - 3:00pm
Speaker: Dr. Bart Scott
Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center
Location:
Hilton Portland & Executive Tower (http://www3.hilton.com/en/hotels/oregon/hilton-portland-and-executive-tower-PDXPHHH/)
921 SW 6th Avenue, Portland, OR 97204 (Google map (http://maps.google.com/maps?q=921+SW+6th+Avenue,+Portland,+OR+(Hilton+Portland+%26+Executive+Tower)&hl=en&ll=45.517534,-122.679906&spn=0.028717,0.031929&sll=34.020479,-118.411732&sspn=1.086995,1.021729&hnear=921+SW+6th+Ave,+Portland,+Multnomah,+Oregon+97204&t=m&z=15))
Chicago, Illinois - Saturday September 28, 2013
Speaker and location to be announced
Philadelphia, Pennsylvania - Saturday October 5, 2013
Speaker and location to be announced
Nashville, Tennessee - Saturday October 19, 2013
Speaker and location to be announced
Los Angeles, California - Friday November 1, 2013
Speaker and location to be announced
See also the NORD PNH Regional Meetings (http://www.rarediseases.org/patients-and-families/patient-meetings/pnh-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.
Meetings will take place from 8:30 or 9:00am to 3:00pm. Breakfast and lunch are included.
To RSVP for any meeting, email Ms. Susan Olivo (solivo@rarediseases.org) 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.
Meeting agenda
Welcome & Introduction
Support Meeting with PNH Expert Lunch
PNH Research & Support Foundation Breakout Sessions
There will be a reception from 7:00-9:00pm the night before each meeting.
Meeting locations and schedule
Raleigh, North Carolina - Saturday May 4, 2013, 8:30am - 3:00pm
Speaker: Dr. Jack Goldberg
Presbyterian Medical Center
Location:
Renaissance Raleigh North Hills (http://www.marriott.com/hotels/travel/rdurn-renaissance-raleigh-north-hills-hotel/)
4100 Main at North Hills Street, Raleigh, NC 27609 (Google map (http://maps.google.com/maps?q=4100+Main+at+North+Hills+Street,+Raleigh,+NC+(Renaissance+Raleigh+North+Hills)&hl=en&ll=35.835907,-78.643827&spn=0.066451,0.063858&sll=34.020479,-118.411732&sspn=1.086995,1.021729&hnear=4100+Main+at+North+Hills+St,+Raleigh,+Wake,+North+Carolina+27609&t=m&z=14))
Portland, Oregon - Saturday June 8, 2013, 9:00am - 3:00pm
Speaker: Dr. Bart Scott
Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center
Location:
Hilton Portland & Executive Tower (http://www3.hilton.com/en/hotels/oregon/hilton-portland-and-executive-tower-PDXPHHH/)
921 SW 6th Avenue, Portland, OR 97204 (Google map (http://maps.google.com/maps?q=921+SW+6th+Avenue,+Portland,+OR+(Hilton+Portland+%26+Executive+Tower)&hl=en&ll=45.517534,-122.679906&spn=0.028717,0.031929&sll=34.020479,-118.411732&sspn=1.086995,1.021729&hnear=921+SW+6th+Ave,+Portland,+Multnomah,+Oregon+97204&t=m&z=15))
Chicago, Illinois - Saturday September 28, 2013
Speaker and location to be announced
Philadelphia, Pennsylvania - Saturday October 5, 2013
Speaker and location to be announced
Nashville, Tennessee - Saturday October 19, 2013
Speaker and location to be announced
Los Angeles, California - Friday November 1, 2013
Speaker and location to be announced
See also the NORD PNH Regional Meetings (http://www.rarediseases.org/patients-and-families/patient-meetings/pnh-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.