The Boston Children's Hospital Multidisciplinary Neurofibromatosis Program, in collaboration with Massachusetts General Hospital, invites you to the 2019 Patient & Caregiver NF Symposium on March 30. Learn about the latest research and clinical trials, connect with other families and ask questions. The agenda will include:
Updates on medications to help shrink tumors in NF
How animal models help with drug discovery
Preimplantation genetic testing and family planning
Highlights from Neurofibromatosis Northeast and Children's Tumor Foundation
Gene therapy initiatives in NF2
Growth & puberty in NF1
"Ask the Experts" session
Final agenda now available!
Joint session (Folkman Auditorium)
8:45 – 9:00
Welcome and “What’s new in NF1, NF2, and Schwannomatosis?”
by Dr. David Miller
9:00 - 9:15
How animal models help us discover drugs for treating tumors
by Dr. David Miller
9:15 - 9:25
Highlights from Children’s Tumor Foundation
by Pam Knight - Director, Clinical Program.
9:25 - 9:35
Highlights from NF Northeast
by Anne Patterson - Patient and Clinic Outreach Coordinator and
Diana Flahive – Director of Operations and Special Events.
9:35 - 9:55
Reproductive Options: Neurofibromatosis
by Lori Dobson, MS, CGC
10:00 - 10:15
10:15 - 10:35
NF1 track/NF2, Schwannomatosis track
Medicines to shrink NF1-related neurofibromas
by Dr. Miller
Medicines to shrink NF2 and Schwannomatosis-related tumors
by Dr. Justin Jordan
10:40 - 11:00
Growth and Puberty in NF1
by Dr. Laurie Cohen
Advancing Gene Therapy for NF2
by Gilles Atlan -NF2 Bio-Solutions Vice President
11:05 - 11:25
Social Challenges and NF1
by Meredith Chambers
Facial Reanimation and Sensory Reneurotization in Schwannomatosis
by Dr. Nate Jowett
11:30 - 12:00
Ask the NF1 Experts
Ask the NF2/Schwannomatosis Experts
Parking and lunch are included with the registration fee. Please park in the Boston Children's Hospital Patient Family Parking Garage at 2 Blackfan Circle.
If the cost of registration is prohibitive please contact Caroline McGowan at firstname.lastname@example.org. Financial assistance is available.
This event is made possible with sponsorship from the Children's Tumor Foundation and NF Northeast.
This event is sponsored in part by the Children’s Tumor Foundation (CTF), a nonprofit organization dedicated to finding effective treatments and supporting individuals worldwide living with neurofibromatosis. For more information, please visit www.ctf.org.