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Home » NF Support

NF Support

Natalie

Natalie McLean. Phone: 9936 6268

I have recently started working for the Children's tumour Foundation/NF Australia. I also work with The Murdoch Childrens Research Institute to assist with supporting the children and their families who come to the new Neurofibromatosis (NF1) clinic here at The Royal Children's hospital (RCH). I have been lucky enough to have been offered space with the very knowledgeable girls here at GSNV. 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 get 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 am working towards building 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.

Next week I am also hoping to put out a request for expressions of interest for a family camp to be run on the Mornington Peninsula at the end of October this year. We'd love to see you there! A great opportunity to meet others with NF, to develop friendships within the community, to get advice and support from people in a similar situation to your own and to share create some great memories. Costs will be subsidised by CTF, but details will only be determined once we have received estimated numbers.

I am also in the beginning stages of developing an information session to be held in Melbourne within the next few months. We are hoping to get some great speakers to come along for an evening focusing on the needs and health monitoring of adults with NF.

There has also been some interest in the development of regional information sessions, which will take some time to get underway.

My role with the NF1 clinic here at the RCH is still undecided, but I'm hoping to be able to offer you the opportunity to ask for me to sit in on your clinic appointment or for some space to be made available for me to meet with you following your appointment should you wish.

I and the rest of the team around me know that the transition from children's services to adult clinics can be challenging, and we will be looking at ways to make this transition easier. Watch this space!

I've been enjoying getting to know members of the NF community and the challenges they face, as well as hearing of their successes! I am available throughout the week should you wish to call for a chat.

 

NF Family Camp - 30th Oct - 1st Nov

Click here to register your expression of interest.

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