As part of the 2024 Global NF Conference, the Children’s Tumor Foundation hosted its second Patient Day—an inspiring gathering of nearly 60 neurofibromatosis or schwannomatosis patients and caregivers from around the world. Designed to elevate the patient voice in the fight against NF, the day blended expert education with collaborative problem-solving. From powerful conversations on clinical trial access and care disparities to roundtable discussions tackling pain management and community awareness, the event was both informative and empowering. Recordings of the Morning and Afternoon Sessions are below.
PATIENT DAY AT THE GLOBAL NF CONFERENCE: MORNING SESSION
Morning Session Agenda – Click the timestamp to jump to the specific agenda item in the video:
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 – The 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 for Neurofibromatosis Type 2 and Schwannomatosis; Scott Plotkin, MD, PhD
02:24:05 – Patient Story; Amit Ghose
PATIENT DAY AT THE GLOBAL NF CONFERENCE: AFTERNOON SESSION
Afternoon Session Agenda – Click the timestamp to jump to the specific agenda item in the video:
00:00 – Priorities and Concerns: Comparing Clinician and Patient/Caregiver Responses; Justin Jordan, MD, MPH
08:09 – Sharing Your Story
11:09 – Panel Discussion: Ask the Experts; Justin Jordan, MD, MPH & Ignacio Blanco, MD, PhD & Eric Legius, MD, PhD
43:27 – Brainstorming and Community Feedback: Setting the Stage; Sarah Lees, MS, MEd, MHA
55:00 – Patient Story; Monique Aerts
01:01:36 – Round Table Brainstorming
01:12:57 – Matt Hay
1:14:48 – Conclusion with Co-Chairs
