Patient Day occurred at the 2024 Global NF Conference. Its purpose was to connect patients with researchers and clinicians, allowing them to collaboratively advance the field of neurofibromatosis and schwannomatosis research and clinical care. The day featured educational sessions focused on diagnostics, lifestyle behaviors, and the roles of patients in clinical trials—from bench to bedside.
MORNING SESSION AGENDA AND TIMESTAMPS:
00:00 – Welcome Remarks; Justin Jordan, MD, PhD & Eric Legius, MD, PhD
03:29 – Keynote Presentation: Pipeline of Treatment Options; Rianne Oostenbrink, MD, PhD, MSc
28:50 – Equity and Access Q&A: An Industry Perspective; Wendy Erler, MBA & Kimberly McCoy, Patient
49:50 – Role of Patients in Treatment Development; Sarah Lees, MS, MEd, MHA
01:15:15 – Gene Therapy; Ignacio Blanco Guillermo, MD, PhD
01:39:20 – The REINS International Collaboration: Partnering with NF and SWN Families to Design Clinical Trials; Vanessa Merker, PhD
01:59:37 – Diagnostics and New Nomenclature; Scott Plotkin, MD, PhD
02:24:05 – Patient Story; Amit Ghose
The afternoon Patient Day Session can be found at:
Be sure to subscribe (and click the bell!) to receive alerts when we post a new video:
About CTF:
The Children’s Tumor Foundation (CTF) is the drug discovery engine for NF. Everything we do is to bring treatments to patients as we work toward a cure. By connecting patients, doctors, scientists, and pharma, we drive treatments, advance care, and deliver results for millions affected by neurofibromatosis or schwannomatosis, collectively referred to as NF. Our patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster, driven by our mission to end NF.
What is NF?
NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. NF affects 1 in 2,000 births and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all races, ethnic groups, and genders equally. The types of NF include neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly called neurofibromatosis type 2 (NF2).
Visit our website at
Donate today at
Follow us on our social media platforms:
Facebook –
Instagram –
X –
LinkedIn –
TikTok –
#endnf #nf1 #nf2 #nf2swn #swn #childrenstumor #neurofibromatosis #schwannomatosis #nervetumor #tumor
source
