Neurofibromatosis Program

Neurofibromatosis Family Symposium

Sunday, April 21, 10 a.m. - 4 p.m. (Check-in begins at 9:15 a.m.)
Colket Translational Research Building, Room 1100 A/B
3501 Civic Center Blvd., Philadelphia PA

Join us at the Neurofibromatosis Family Symposium on Sunday, April 21. At this free, one-day event, hosted by The Children's Hospital of Philadelphia, the Neurofibromatosis Family Association and the Children's Tumor Foundation, neurofibromatosis experts will provide information about advances in NF research and offer practical advice on issues facing patients and families living with the disorder.

Agenda

Vascular Disease in NF1: Why the blood vessels are important
Socialization in Children with NF1
NF2: Current Overview with a Focus on Genetics
Update on Clinical Trials for NF1 and NF2
Preparing for the Transition to Adulthood
Dual Support Group Meetings
- Parents of NF Children
- Adults living with NF
Children are welcome
- Our Child Life Specialists will provide fun and educational activities.
- Children will have the opportunity to take part in a social skills group.

Our partner organizations

About the NFFA

The Neurofibromatosis (NF) Family Association is a parent volunteer group that exists to support families and individuals at The Children’s Hospital of Philadelphia (CHOP) who are affected by NF1, NF2 or Schwannomatosis. The goal of the Association is to help enhance and expand CHOP’s NF clinical services and research endeavors, and build an NF community through robust educational and fundraising activities.

About the Children's Tumor Foundation

The Children’s Tumor Foundation is dedicated to improving the health and wellbeing of individuals and families affected by neurofibromatosis types 1 and 2, and Schwannomatosis (collectively known as NF). NF affects more than one in 3,000 people and causes tumors to grow on nerves throughout the body. NF can lead to deafness, blindness, learning disabilities, and some forms of cancer. The Foundation funds research, provides patient support, establishes best practice guidelines, and expands public awareness to promote early and accurate diagnosis of NF. For more information visit the Children's Tumor Foundation website.

Speakers

Michael Fisher, MD
Associate Professor of Pediatrics
Director, Neurofibromatosis Program
Center for Childhood Cancer Research and Division of Oncology
The Children’s Hospital of Philadelphia
Perelman School of Medicine at the University of Pennsylvania

Katherine Nathanson, MD
Associate Professor of Medicine
Translational Medicine and Human Genetics
Co-Leader, Cancer Control Program, Abramson Cancer Center
Perelman School of Medicine at the University of Pennsylvania

Nicole Ullrich, MD, PhD
Associate Professor of Neurology
Associate Director, Neurofibromatosis Program
Boston Children's Hospital/Harvard Medical School

Nicole Ellis, LSW
Social Worker*

Matthew Hocking, PhD
Pediatric Psychologist*

Jamie Johnson, BSEd
Special Education Teacher*

Jennifer Lemisch, MA, ATR-BC, LPC
Art Therapist*

Rebecca McIntyre, MS, MEd, LCSW
Social Worker*

Iris Paltin, PhD
Pediatric Neuropsychologist*

Eileen Kenna Satullo, LSW
Social Worker*

* The Children’s Hospital of Philadelphia

Contact Us

Awards and Honors

Legal

Short Cuts

Main Number: 215-590-1000
Physician Referral Service: 1-800-879-2467
Coordinates: 39.9486937, -75.1929596
An Equal Opportunity Employer
The Children's Hospital of Philadelphia is an equal opportunity employer. We do not discriminate on the basis of race, color, gender, sexual orientation, age, religion, national or ethnic origin, disability or veteran status.