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Home » NF Support

NF Support

Natalie

Natalie McCloughan - 9936 6268

Co-located with the GSNV my role is funded by the Children's Tumour Foundation of Australia and the Murdoch Children's Research Institute to support people impacted by Neurofibromatosis (NF) through coordination of the NF Clinic at The Royal Children's Hospital (RCH) and through the development and implementation of supports for both adults and children and their families/friends in the community.

Despite my location I am here to support all members of the NF community, adults and children alike, and not just those with an NF1 diagnosis either. I'm here to support people with NF2, schwannomatosis and those who have a question mark hanging over one of these diagnoses.

What do I do? I support you, the members of the community, to access the information and services you need. I'm also here to listen, to support you when life is tough and to ensure that you are heard.

I have and continue to build a database of doctors and specialists who see patients with NF. These names are gathered from people like you, who are satisfied with the service and care they have received. So, if you can recommend anyone to add to my list I would love to hear from you.

What can I offer as part of the NF Clinic:

  • Access to a multi-disciplinary team of doctors and specialists
  • Access to some same-day appointments, therefore minimising the time spent travelling to hospital for appointments.
  • Liaison with other RCH departments to ensure continuity of care
  • Links to specialists for information, advice and recommended community resources.
  • Time to meet with you after your NF Clinic or other hospital appointments to provide support and information.
  • Links to relevant research happening within RCH.

What else can I, and CTF offer:

  • Links with local community support groups through peer leaders
  • Links to individuals/families with similar experiences
  • Information seminars which are held from time to time
  • Family camps and days out
  • Information resources
  • Monthly e-newsletter
  • Online, telephone and in-person supporting

In conjunction with members of the community I am also in the beginning stages of developing a youth program to specifically support 13 - 25 year olds in accessing supports and to assist maintaining their health.

I enjoy getting to know you, members of the NF community and the challenges you face, as well as hearing of your successes! I am available throughout the week should you wish to call for a chat.

Our upcoming events and activities will be shared with you through the NF E-Bulletin and the GSNV Bits and Pieces.

Healthcare Directories

Virtual Communities

Webinars & Podcasts

Support Groups

Klinefelter Support

Neuromuscular Support

NF Support