Celebrating 35 Years

iNFo Fair 2018: Care Guidelines for Adults with NF1

For adults with neurofibromatosis (NF) type 1, finding good care and doctors who are knowledgeable about the many complications and variations of NF is very difficult. NF Midwest is very aware of this issue and we are doing all we can. Unfortunately, it may always be a struggle as local physicians simply don’t have enough patients in order to gain the experience needed.

We believe that arming patients with knowledge is a vital way to improve care. That’s why in 2016 we invited Dr. Plotkin from Mass General speak about adult complications in NF1 and last year we had Dr. Marker talk about how to work with your primary physician.

Recently, several NF experts worked collaboratively to create a Care Guideline for Adults with NF to help physicians better understand the complications and requirements for the care of an adult with NF1. Their work was published earlier this year by the  American College of Medical Genetics and Genomics (ACMG).

This year we’ve invited Dr. David Stevenson, one of the authors of the Care Guideline for Adults with NF, to give us more insight into these guidelines and how they should be used. If you are an adult with NF1 or a parent of a child with NF1, it is very important that you get this information.

Dr. Stevenson is a Professor at Stanford University in the Division of Medical Genetics. He is the Service Chief for Medical Genetics and Program Director for the Medical Genetics Residency Program at Stanford University.  Beginning in medical school his research interests focused on neurofibromatosis type 1 (NF1), and since that time he has expanded his research to other syndromes of the Ras/MAPK pathway focusing on the orthopedic problems and effects of Ras dysregulation on bone homeostasis.   He now co-directs an NF Clinic at Stanford and much of his medical practice is devoted to caring for individuals with NF.  He has published over 120 articles and 2 GeneReviews focused primarily on Ras/MAPK syndromes.

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