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Neurofibromatosis Midwest


Archive for the “Learn About Neurofibromatosis” Category


Positive Exposure for Neurofibromatosis

NF Midwest is very excited to have Rick Guidotti of Positive Exposure speaking at our symposium Saturday, October 24th.

Rick is an award winning fashion photographer who uses photography and video to transform public perceptions of people living with genetic, physical and behavioral differences.

Seven years ago we were very fortunate to have Rick speak at our symposium and to take beautiful photos Read the Rest…

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Update: Insurance Coverage for the Removal of Neurofibromas

If you have cutaneous neurofibromas that are causing you any distress you CAN have them removed. They are ALMOST always covered by insurance, Medicare and Medicaid if the paperwork filed by the physician is properly coded and documented.

As of October 1, the United States has transitioned from ICD-9 (International Code of Diseases) to updated ICD-10 Read the Rest…


25th Symposium and (new) iNFo Fair

Our 25th Annual Neurofibromatosis Symposium is scheduled for Saturday, October 24th and new this year, it will include an iNFo Fair!

The NF Symposium and iNFo Fair will feature short presentations on various subjects designed to inform and

help improve the lives of those with neurofibromatosis.  There will also be tables with extra information manned by Read the Rest…


be iNFormed for Teachers

School is starting! If you have a child with neurofibromatosis type 1 you might find our be iNFormed article NF1 Information for Teachers helpful.

 This article is specifically meant as an aid for teachers and was generously provided to us for duplication by the British Columbia Neurofibromatosis Foundation (BCNF).

Read the Rest…

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Recording – Managing Pain in Neurofibromatosis

In February 2013 NF Mid-Atlantic hosted a webinar on “Managing Pain in Neurofibromatosis”. The speaker was Andrew Tyler Putnam, MD from the Palliative Care Program at Smilow Cancer Hospital.

We’ve provided the recording of the webinar below. This webinar focuses mainly on pharmacological (drug) treatments for pain. It gives a great starting point for understanding the Read the Rest…

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Recording – Genetics 101

We just came across this excellent 2013 “Genetics 101″ webinar recording from the RASopathies Foundation. The speaker is Beth Hopkins Denenberg, a pediatric genetic counselor.

If you’d like to learn more about genetics you may also find the University of Utah Health Services Tour of Basic Genetics helpful.

Read the Rest…