NORD to Hold Six PNH Patient and Family Meetings in 2013

[Marrowforums]

The National Organization for Rare Disorders 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 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
4100 Main at North Hills Street, Raleigh, NC 27609 (Google map)

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
921 SW 6th Avenue, Portland, OR 97204 (Google map)

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 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.