Neurofibromatosis Midwest is led by people with personal connections to and a real understanding of the difficulties of neurofibromatosis and schwannomatosis. Our first consideration is always what is best for the NF cause and community.
We offer many avenues of support and education for NF affected families and individuals. This includes phone support for such things as clinic information or for an understanding ear. We offer a free packet of information to newly diagnosed patients and continuing information through regular updates, newsletters, articles on our website, and timely response to phone and email inquiries. We also provide referrals to NF specialists and, if requested, introductions to other individuals with neurofibromatosis and/or families for support. We encourage those who are interested in discussions with other NF individuals and families to join the NF Network Message Board and the NF Midwest Facebook Group.
From time to time we host informal receptions to bring together NF patients, family members and medical professionals who enjoy the opportunity (many for the first time) to learn more about neurofibromatosis and schwannomatosis and NF Midwest.
Below are some of the ways to find support through NF Midwest.
The Inspire Board is maintained by the NF Network and is an excellent way to share experiences and learn from others all over the world. This is an active bulletin board in which people can post and/or answer questions or simply lurk and learn.
“Liking” NF Midwest’s Facebook page provides timely updates.
NF Midwest maintains a PRIVATE facebook group for those with an interest in neurofibromatosis who reside in our region. Please, ask the join the group and be a part of the NF Midwest community to work together on events, ideas or simply share concerns.
NF Midwest Facebook Group
DoIt 4NF events are a great way to meet others with neurofibromatosis and to find support.
NF Midwest works with volunteers to create local groups for support, events and awareness.