By Fiona Soltes
A sense of community and belonging is important for everyone – and particularly so for those with uncommon disorders. NHF helps meet the needs of those with ultra rare platelet and blood disorders through a variety of pre-conference sessions and a Saturday evening networking hour.
“For many people, especially those who live in areas with little representation, these conferences may be the only opportunity for them to meet other people who share the same experience with the disease,” said Aaron Cheng, MD, a fellow in hematology and oncology at the University of Pennsylvania. “It is a very important way for patients to come together, share their stories, learn from each other, and help to advocate for each other and for themselves.”
Dr. Cheng will take part in Pre-Con: Ultra Rare – Platelet Disorders and More on Thursday afternoon. The session will focus on Glanzmann’s thrombasthenia, Bernard-Soulier Syndrome, thalassemia and other ultra-rare platelet and blood disorders. Attendees can expect disease-specific information and tips for navigating the emergency room, as well as hear from lived experience experts. There will also be time for social interaction and personal connection. Simultaneous sessions will be held for those impacted by factor I, factor II, factor V and factor VII deficiencies (held in Maryland Ballroom 3-4), as well as factor X, factor XI, factor XII and factor XIII deficiencies (Maryland Ballroom 1-2).
“I hope that people come away with an empathy toward patients with rare diseases, and understand that they are a motivated, intelligent and determined group of people who are eager to learn and to advocate for themselves and for their communities,” Dr. Cheng said. “Participating in this ultra rare community is particularly important for me, as a patient and a physician who is interested in advocating for people with rare diseases. Through these conferences, I get to learn from the patients themselves and hear their stories, which will inform how I am able to advocate for them in the clinic and the hospital.”
Dr. Cheng will be joined by Michael DeGrandpre, BDC planning committee member, national advocate and spouse of a person with a bleeding disorder; Chelsee Nabritt, lived experience expert, advocate and former National Youth Leadership Institute member; Veronica Flood, MD, pediatric hematologist and researcher at the Medical College of Wisconsin and member of the Comprehensive Center for Bleeding Disorders in Milwaukee; Penny Kumpf, BSN, RN-BC, von Willebrand outreach nurse at Hemophilia of Georgia; and Gabi Flores, National Youth Leadership Institute.
“This group of panelists is a great mix of representatives for different types of diseases,” Dr. Cheng said, “and demonstrates how, despite the differences in nuances between each disease, ultimately we are more similar than we are different, in that we benefit from having a cohesive community to turn to in times of need.”
Thursday, 2:40 p.m. - 4:50 p.m.
Consumer Track
Chesapeake 1-3 | Ballroom Level
Friday, 5:15 p.m. - 6:15 p.m.
Potomac 3-4 | Ballroom Level
Industry Symposia Demonstrate Benefits of Partnership
The 75th annual Bleeding Disorders Conference will once again highlight the latest in research and medical advances, thanks in large part to NHF's industry partners. Two symposia are scheduled for early Friday morning.
Friday, 7:30 a.m. - 8:45 a.m.
Maryland Ballroom CD | Ballroom Level
Potomac CD | Ballroom Level