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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

NF2 Resources

General

NF2 Glossary – Created by NF Midwest and the NF2 Crew  PDF

Understanding Neurofibromatosis Type 2 Booklet PDF

Possible Complications of NF2 Shown on BodySheet PDF

The Genetics of Neurofibromatosis-2 – Presented by NF Network Webinar

Technology and NF2 – Presented by NF Mid-Atlantic  Transcript

Review and chart of applications to support spoken communication and hearing loss - PDF Review  Chart

 

Treatment

Consensus Recommendations for Current Treatments and Accelerating Clinical Trials for Patients With Neurofibromatosis Type 2 from The American Journal of Medical Genetics (Sep 2011) PDF

Neurofibromatosis Type 2 Imaging Website

 

Hearing

Cochlear Implants in NF2 – NF2 Crew interview of  Derald E. Brackmann, M.D. of the House Ear Institute in Los Angeles (2009) PDF

Auditory Brain Implant (ABI) and Cochlear Implant (CI) Webinar Recording – Presented by the NF Network with Dr. William Slattery, House Ear Institute, California

Eyes

Ocular Manifestations of Neurofibromatosis: Relief for Dry Eyes – NF Midwest Symposium Transcript Presented by Louise A. Sclafani, OD, FAAO PDF

 

Transcripts

Patient-Centered Research in NF2: Improving Quality of Life - Amanda Bergner, MS, CGC, Johns Hopkins Transcrip (2013) PDF

Identification and Development of Therapeutic Targets in Neurofibromatosis Type 2 - Joseph Kissil, NF Midwest Transcript (2013) PDF

Research Advances in Neurofibromatosis Type 2 from NF Network webinar with Ashok Asthagiri, M.D. (Jan 2013) PDF

Facial Reanimation from NF Network webinar (Feb 2012) PDF

Research Update by Ashok R. Asthagiri, M.D., HHS/NIH/NINDS NF Midwest Symposium  (2011) PDF

Patient Care Delivery at Northwestern  – Dr. Andrew Fishman at NF Midwest symposium (Oct. 2011) PDF

NF2 Research at Massachusetts General Hospital - Vijaya Ramesh, Ph.D NF Midwest Symposium Transcript (2010) PDF

Technology and NF2 - Presented by NF Mid-Atlantic Recording and Transcript

 

Websites

NF2 Crew – A Neurofibromatosis Type 2 Support Community - nf2crew.org

Advocure, Inc. – Advancing Research for NF Type 2 - advocurenf2.org

Acoustic Neuroma Associationanausa.org

Association for Late Deafened Adults, Inc. –  alda.org

Can You Hear Us? – This is a self-help, support, and social advocacy group giving a voice to people with NF2 - canyouhearus.co.uk