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Neurofibromatosis Midwest


Archive for the “Research” Category

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Participants Needed for NF1 Study on Coping with Pain

 Coping with Pain: an ACTive Approach


Do you have NF1 and one or more plexiform neurofibromas?
Do you have pain that has lasted three months or more?
Are you between the ages of 16 and 34 years?


If you answered yes to all these questions, you may be eligible for a new study at the National Cancer Institute in Bethesda, Read the Rest…

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Important Survey

The Department of Genetics at Stevenson University is conducting a survey on the psychological effects of “looking different” which was inspired by NF Mid-Atlantic with their series of interviews on the subject last year.

There has been so little research on the psycho-social ramifications of living with this incurable, variable, often disfiguring, and potentially Read the Rest…

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Children 9-13 with NF-1 Needed for Study

Bonnie Klein-Tasman, Ph.D and her team at the University of Wisconsin-Milwaukee are looking for children ages 9 to 13 with NF-1 to participate in a quick research study. The study will take about 4.5 hours and will help researchers learn more about the social, cognitive, and emotional abilities of children with neurofibromatosis-1.

It’s preferred that Read the Rest…


Neurofibromatosis Research Helping Scientists to Understand Autism

People with neurofibromatosis type 1 have a higher incidence of many different complications. Tumor growth and learning disabilities are especially prevalent, but NF1 also causes higher rates of bony abnormalities, seizures, pain, aneurysms and much more. For scientists, the mechanisms of NF1 and the NF1 gene offer great incite and understanding into the causes of Read the Rest…

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Volumetric Measurement of Tumors in Neurofibromatosis

At NF Midwest’s annual symposium in October 2014 we invited Eva Dombi, MD, from the National Cancer Institute to present information about how a newer technology called volumetric measurement is used to measure tumors in neurofibromatosis. The transcript from her presentation is now available online on our website.

What is Volumetric Read the Rest…