I want to organize a fundraiser for NF Midwest but I’m not sure what to do.
We have lots of ideas on ways that you can help raise funds and awareness for your NF Midwest. You…
We have lots of ideas on ways that you can help raise funds and awareness for your NF Midwest. You…
Contact NF Midwest or check out our guidelines and submit the Fundraiser Proposal Form. Once the agreement is signed and…
Schwannomatosis is a rare form of neurofibromatosis that has only recently been defined. Similar to people with neurofibromatosis type 2…
The incidence of schwannomatosis is not known yet. Some estimates are as high as 1 in 40,000 people. Please follow…
While schwannomatosis is a genetic condition, it does not have a clear pattern of inheritance like NF1 and NF2. Also,…
As schwannomatosis is a recently recognized disorder, the full spectrum of symptoms is not yet known. For some people, the…
The diagnosis of schwannomatosis is made on the basis of clinical findings. Individuals are considered to have definite schwannomatosis if…
Genetic testing for the INI1 gene is available and can be coordinated for families in which testing would be appropriate….
The genetics of schwannomatosis are not yet clearly understood so it can be difficult in some families to determine who…
There is no one treatment course that is right for everyone with schwannomatosis, and as of yet there are no…
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