Agenda
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NF Forum Weekend ObjectivesThe NF Forum was created in response to the desire of the NF community to better understand the disorder as well as learn about advances in NF research. The key objective of the Forum is to facilitate a patient support weekend where individuals affected by NF and their families can learn about medical advances in NF, receive information on clinical trials they may be candidates for, get practical advice on issues facing them and learn about the important resources provided by the Foundation to help families cope with NF. Program Highlights This gathering promises to be another wonderful weekend featuring experts in the field of NF research and clinical care. Attendees will meet other parents, children, and adults affected by NF, learn a great deal about the disorder and methods of management and share their experiences with one another. Plus you will have the opportunity to get practical advice on the challenges of dealing with NF and an opportunity to gain support from a knowledgeable, understanding community. Support opportunities include: Welcome Reception, meals, breaks, specific breakout sessions , and the NF Walk. Additionally the new meeting structure provides NF1 and NF2 specific workshops that covers comprehensive research and clinical trials education and bonus breakout session for hot topics that patients always ask about .
General Session topics: Understanding Health Insurance, Lobbying, Understanding Clinical Trial and much, much more!
Breakout Session topics: Complementary and Alternative Medicine, Reproductive issues in NF1 & NF2, Adults with NF1, School Relates issues – IEP’s 504’s and how to advocate for your child and New hearing technologies for NF2.
Disorder specific workshops:
NF1 Workshops:
· NF1 clinical trials update
· Plexiform neurofibromas
· Novel approaches to removing dermal neurofibromas
· Itching in NF1
NF2 Workshops:
· Clinical trials update
· Tinnitus and treatment options
· Radiation treatment and ABI’s (hearing preservation)
. Managing your tumors and what is important to the patient.”
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