Washington University Neurofibromatosis (NF) Center

Washington University Neurofibromatosis (NF) Center Providing exceptional care to individuals with NF through groundbreaking research. Louis area for the convenience of our patients and families.

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The information contained in the Washington University School of Medicine online site (“Site”), and its affiliated Washington University Physicians online site, is solely intended to provide an overview of services offered at Washington University School of Medicine. Information about diseases and medical conditions on this Site and on its linked resources is for educational and informational purposes only and should in no way be taken to be the practice of medicine or the provision of medical, nursing or professional health care advice or services. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your physician or other health care provider. The information obtained from this site and any linked resources is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatments. Should you have any specific health care-related questions, please contact or visit your physician or other health care provider promptly. Any links to other Internet websites of non-affiliated external sources does not imply endorsement by Washington University Physicians or Washington University School of Medicine (sometimes referred to in this Privacy Policy as “us,” “we” or “our”) of any products, services or information presented in these external Internet websites, nor do we guarantee the accuracy of the information contained on them. In addition, since we have no control over the privacy practices of linked external Internet websites you should read and understand the policies of all linked external Internet websites with respect to their privacy practices. The Washington University NF Center provides information on free, family-friendly events throughout the St. As part of this free service, our listing may contain links to external websites not owned by or affiliated with Washington University. The university provides links to third-party websites solely for the convenience of the user. Washington University does not endorse the information, content, products or services provided on any third-party sites linked to university websites. The university is not responsible for the privacy practices or the content of such websites.

‼️ATTENTION‼️ Florida State University College of Medicine is currently seeking individuals to participate in TWO differ...
07/23/2025

‼️ATTENTION‼️ Florida State University College of Medicine is currently seeking individuals to participate in TWO different NF1-based research studies. Interested in learning more, read through the flyers or email dearlab@med.fsu.edu.

Want to complete the initial screening process to see if you qualify to participate, follow the links below:

SMART-NF1 Project: https://redcap.med.fsu.edu/surveys/?s=RRMN7WPT7WTHR7LJ
NF1 Cognitive Study Flyer: https://redcap.med.fsu.edu/surveys/?s=WW9P3DLCLAHJAXEC

Hosted by the June Jessee Memorial Foundation and in partnership with St. Louis Children's Hospital Cerebral Palsy Cente...
07/21/2025

Hosted by the June Jessee Memorial Foundation and in partnership with St. Louis Children's Hospital Cerebral Palsy Center, a special feature of Disney's "Out of My Mind" will be screened at Kirkwood Public Library August 3rd. The movie highlights an individual with cerebral palsy and the challenges she faces in her day to day life.

The goal of the special screening is to bring awareness to the community of the kinds of challenges that children with all disabilities may experience and how everyone can be more supportive. If you're interested in attending, click on the link below to register:

https://secure.lglforms.com/form_engine/s/58umRU4pnYTe3ZL4Fbphow

👏🏻👏🏻👏🏻 Dr. Hirbe is the best!!
07/20/2025

👏🏻👏🏻👏🏻 Dr. Hirbe is the best!!

Meet Dr. Angela Hirbe, the 2024 Project Dream Recipient. She is an Associate Professor of Medicine and Pediatrics and the Director of the Adult Neurofibromatosis Clinical Program in the Division of Oncology, Sarcoma Section at Washington University Neurofibromatosis (NF) Center. Dr. Hirbe has been awarded a grant for her study titled "Define the Global Dysregulation That Occurs in Cells with Chr8Q Gain (MPNST)."

Read more about her and her study here: https://tinyurl.com/jj6wpaa2

Such a great day!
07/19/2025

Such a great day!

The 3rd Annual NF Family Day was a success with only a tad bit of rain! Thank you to all of our partners, vendors, and v...
07/19/2025

The 3rd Annual NF Family Day was a success with only a tad bit of rain! Thank you to all of our partners, vendors, and volunteers for helping make it amazing for our families. A special shoutout to St. Louis Metropolitan Police Department (OFFICIAL) and St. Louis Fire Department! The races down the inflatable slide with the firemen were definitely a big favorite!

The 3rd Annual NF Family Day is so close!!! We can't wait to see everyone's smiling faces 😄And don't worry, it is not to...
07/17/2025

The 3rd Annual NF Family Day is so close!!! We can't wait to see everyone's smiling faces 😄

And don't worry, it is not too late to register!! Click the link here >>> https://www.eventcreate.com/e/nf-family-day

Taylor Swift, you’d make a very special girl very happy!
07/09/2025

Taylor Swift, you’d make a very special girl very happy!

Julie Durham had never heard of neurofibromatosis type 1 (NF1) until her daughter, Harper Grace, received the diagnosis when she was less than two years old.

Now, Durham’s daughter is about to have her tenth brain surgery at St. Louis Children’s Hospital. NF1 is responsible for uncontrolled tissue growth along nerves that can lead to tumors.

Harper’s spirits remain upbeat thanks to her love of Taylor Swift. Durham has shared videos of Harper singing with nurses and staff on a page dedicated to documenting the family’s journey.

❗❗❗ Pub Krawl 2025 benefiting the NF Center in Detroit, Michigan ❗❗❗Not local to Detroit, not a problem! You are still w...
06/26/2025

❗❗❗ Pub Krawl 2025 benefiting the NF Center in Detroit, Michigan ❗❗❗

Not local to Detroit, not a problem! You are still welcome to register/donate and receive the awesome gifts that come with the event.

You can register following this link or scanning to QR code >>> Giving.washu.edu/krawlinforNF

05/17/2025

Wearing our blue and green for World NF Awareness Day! Let's see yours! 💙💚 Washington University Neurofibromatosis (NF) Center

Thank you   for having some of our WashU faculty present about NF1
10/24/2024

Thank you for having some of our WashU faculty present about NF1

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