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Wed Sep 7, 2016, 09:38 PM
The National Organization for Rare Disorders (www.rarediseases.org) will hold four one-day meetings for PNH patients and their families in September through December 2016.
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. There is a light buffet reception the night before.
To RSVP for any meeting or for more information, contact Ms. Susan Olivo at NORD by email (solivo@rarediseases.org) or at 203-744-0100.
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.
Friday agenda (7:00 to 9:00pm)
Buffet reception
Saturday agenda (8:30am to 3:00pm)
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 PNH Patient Meetings (https://rarediseases.org/pnh_2016/) page for 2016.
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.
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. There is a light buffet reception the night before.
To RSVP for any meeting or for more information, contact Ms. Susan Olivo at NORD by email (solivo@rarediseases.org) or at 203-744-0100.
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.
Friday agenda (7:00 to 9:00pm)
Buffet reception
Saturday agenda (8:30am to 3:00pm)
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 PNH Patient Meetings (https://rarediseases.org/pnh_2016/) page for 2016.
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.