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NF connect for NF2-SWN
Designed for people (18+ years) impacted by NF2-related Schwannomatosis (NF2-SWN)
These quarterly sessions are a chance to connect with others who understand the unique challenges of living with NF2. They’re small, supportive and informal - a space to check in, share experiences, ask questions and exchange information, all from the comfort of your own home.
Conversations are guided by the group and often touch on things like available supports, changes in diagnostic criteria or terminology, treatment options, and upcoming research. But just as often, it’s about swapping stories, building community and knowing you’re not facing NF2 alone.
Like our other NF Connect groups, sessions run on Zoom with auto-captioning and chat enabled to support those with hearing impairments.
Upcoming sessions
Thursday 20 August, 8:00-9:00pm (AEST)
Thursday 19 November, 8:00-9:00pm (AEST)
Living with a rare and not well known condition can be very difficult and lonely at times. NF-2 Connect from CTF was a wonderful platform to help me fill a void that I didn’t know I had until I jumped on and met other people across Australia with that condition.
There’s a great sense of community and belonging in these sessions where we can bond over our shared condition that no one else would understand. What is most rewarding for me was talking to people who had gone through surgeries or taken medication that I was about to myself, so I could learn about the process and what to expect from someone that experienced it first hand."
Michael, NF-2 connect participant
NF2 Connect for me is about a sense of belonging/normalising the quirks that come with having NF2. Coming together with other people who have a lived experience of the same rare condition, in a supportive environment, knowing these people actually get what you are talking about. Being about to share ideas, discuss technology/equipment that is available and get honest feedback."
Kylie, NF-2 connect participant