NORD hosts regional disease-specific patient meetings at locations across the US for certain rare diseases. These events are an opportunity for individuals to meet and connect with other patients, speak with an expert medical professional, and learn about available research and resources. Patients who attend these FREE events gain the encouragement and hope that comes from meeting face-to-face with others affected by the same disease.
* click on the date and location for details and to register*
Hyatt Place Dulles Airport North
21481 Ridgetop Cir.
Sterling, VA 20166
Amy Dezern, MD, MHS
Assistant Professor of Oncology
Johns Hopkins Sidney Kimmel Cancer Center
Embassy Suites by Hilton Miami International Airport
3974 NW S River Dri.
Miami, FL 33142
Yu-Min Shen, MD
Associate Professor, Internal Medicine
University of Texas Southwestern Medical Center
Hyatt Place North Charleston
2455 Prospect Ave.
North Charleston, SC
Johnson Liu, MD, FACP
Pediatric Hematology & Oncology, The Karches Center for Oncology Research, The Feinstein Institute for Medical
Research Professor of Pediatrics
Hofstra Northwell School of Medicine
*click on the date and location for details and to register*
Embassy Suites by Hilton Denver-Downtown
1420 Stout Street
Denver, Colorado 80202
Embassy Suites by Hilton Detroit – Livonia/Novi
19525 Victor Pkwy
Livonia, Michigan 48152
Downtown Providence Courtyard by Marriott
32 Exchange Terrace
Providence, Rhode Island 02903
Although each event may vary slightly, the following agenda provides an overview of the structure of each PNH Patient & Caregiver Meeting.
Friday: Welcome Reception from 7:00 p.m. – 9:00 p.m. (light buffet served)
Saturday: Registration & Educational Meeting 9:15 a.m.- 2:30 p.m.
(continental breakfast to be supplied by hotel)
NORD’s Disease Specific Assistance Programs are designed to help patients with out-of-pocket costs associated with their insurance plans such as monthly premiums, deductibles, co-payments, and co-insurance. PNH patients should contact NORD by using the information below to learn more about the PNH Disease Specific Assistance Program.
NORD offers the following additional information and resources for those impacted by paranocturnal hemoblobinuria (PNH):