Welcome - Neurofibromatosis type 1 (NF1) Community

What is Neurofibromatosis type 1 (NF1) ?

Neurofibromatosis type 1 (NF1) is a clinically heterogeneous, neurocutaneous, genetic disorder characterized by café-au-lait spots, iris Lisch nodules, axillary and inguinal freckling, and multiple neurofibromas.

Source: Orphanet 

Neurofibromatosis type 1 (NF1) Resources

More members stories

Latest Member Stories

Max's story with NF1

by natalialoose published 6 months ago

Everyone thought it was a birthmark, caused by a pregnancy craving. We didn’t notice any others on his body. We didn’t pay much attention, as the p...

NF children - how it began

by claas published about 1 year ago

Hello, dear NF community

My name is Claas Röhl. I'm pleased to welcome you here to the RareConnect NF group. This group emerged through co-oper...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.