Designed to provide a comprehensive and highly interactive overview of novel and emerging data, as well as establish a foundational knowledge base of NF1 as a tumor predisposition syndrome, this activity will begin by identifying hallmark aspects of NF1 natural history and clinical presentation, reviewing updated diagnostic criteria, and describing the genetic etiology and complex pathophysiology that has historically made NF1-associated plexiform neurofibromas (PNs) so difficult to treat. Catalyzed by a dynamic case-based approach, attendees will then be guided through an expert-led exploration of emerging clinical trial data for targeted medical therapies in the setting of NF1-associated tumors, with particular emphasis on toxicity profiles and responsive strategies for anticipating, mitigating, and managing adverse events. Finally, premier clinical experts will examine the pivotal patient-facing role of the pediatric hem/onc nurse in the shifting NF1 treatment paradigm, and real-world patient cases will offer an opportunity to design interprofessional approaches to practical nursing challenges in NF1, including patient assessment, patient/parent education and answering difficult questions, effective emotional support tactics, drug toxicity mitigation tools, and expectation management.

Douglas C. Miller, MD, PhD; University of Missouri School of Medicine. Dr. Miller is a Programmatic Panel member for CDMRP's Neurofibromatosis Research Program.

Learn about the many ways people may be affected by neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis. Help increase awareness, reduce stigma, grow love, and make sure No one Fights alone!

#endnf #nfmidwest

Dr. John Ealing, Consultant Neurologist, St Mary's Hospital Manachester
Talk on managing your Neurofibromatosis Type 1

Leading researchers in the field highlights primary topics within NF1, NF2, and schwannomatosis in this introductory webinar. Also presented are the NF track challenges and the data sets that will be provided at HACK4RARE 2021.

Speakers include:

Nancy Ratner, PhD
Professor, UC Department of Pediatrics
Cincinnati Children's Hospital Medical Center

Marco Giovannini, MD, PhD
Professor-in-Residence, Head and Neck Surgery
University of California at Los Angeles

Salvo La Rosa, PhD
Chief Scientific Officer
Children's Tumor Foundation

Jineta Banerjee, PhD
Senior Scientist
Sage Bionetworks

HACK4RARE 2021 is a virtual hackathon event organized by the Children’s Tumor Foundation and MIT Hacking Medicine, calling on health care startups, researchers, developers, solution architects, and hackathon enthusiasts to solve complex problems within the rare disease space. Visit hack4rare.org for more information.

Closed captioning is available (please click on the CC button).

Leading researchers in the field highlights primary topics within NF1, NF2, and schwannomatosis in this introductory webinar. Also presented are the NF track challenges and the data sets that will be provided at HACK4RARE 2021.

Speakers include:

Nancy Ratner, PhD
Professor, UC Department of Pediatrics
Cincinnati Children's Hospital Medical Center

Marco Giovannini, MD, PhD
Professor-in-Residence, Head and Neck Surgery
University of California at Los Angeles

Salvo La Rosa, PhD
Chief Scientific Officer
Children's Tumor Foundation

Jineta Banerjee, PhD
Senior Scientist
Sage Bionetworks

HACK4RARE 2021 is a virtual hackathon event organized by the Children’s Tumor Foundation and MIT Hacking Medicine, calling on health care startups, researchers, developers, solution architects, and hackathon enthusiasts to solve complex problems within the rare disease space. Visit hack4rare.org for more information.

Closed captioning is available (please click on the CC button).

Heather Radtke, MS, CGC, discusses Genetic Testing at the Children's Tumor Foundation 2015 NF Forum. To enable closed captioning, please click the CC button.

Communication-Related Quality of Life Among Individuals With and Without Neurofibromatosis Type 1 (NF1): A Pilot Project
Presented by Kimberly Marrs