REiNS Cutaneous Neurofibroma
When Gregg and his wife, Becky, learned their son had Neurofibromatosis 6 years ago, they took a common first step for parents after receiving an NF1 diagnosis: they Googled “NF”. Online search results revealed imagery of patients with a relatively high burden of cutaneous neurofibromas (cNFs). These images can be difficult to absorb, knowing that 99% of patients will develop some level of cNF burden in their lifetimes. For this reason—and countless others—Gregg joined the REiNS initiative 1 year ago, knowing he wanted to be a part of the cNF working group (one of eight working groups) within REiNS.