We offer services and programs to support individuals of all ages, their families and other members of the community impacted by Neurofibromatosis type 1 (NF1), Neurofibromatosis type 2 (NF2) and Schwannomatosis.
Our team engages with the community through a variety of channels to ensure that the services we provide best meets the needs of those accessing our services.
The services we currently provide include:
- Information & Support
- Community Engagement and Peer Support
Information & Support
Our Support Coordinators can be contacted via telephone and email Monday – Friday from 9 am – 5 pm (AEST). You can also send us a message via our online enquiry form.
This is a confidential service which is here to provide:
- Information about Neurofibromatosis and current research
- Resources available within the healthcare sector and community services
- Referral details for specialists and other available services
- Information sheets, a monthly e-bulletin and website content
- Social media supports
- Information relating to our community oriented events
Our support coordinators are also trained genetic counsellors so are here to provide emotional support and also just to chat.
Subscribe to our monthly E-bulletin to be provided information about events, supports, research opportunities and all the goings on here at CTF.
Community Engagement and Peer Support
Our Support Coordinators with the assistance of volunteers arrange:
- Family Camps
- Family Days
- Community information events
- Links between individual families/members of the community
- Links to and events for community support groups
- Safe online spaces for community engagement
Visit the Events page for information about upcoming community events
Advocacy is an extremely important aspect of what we do. Our team is here to support you and the wider NF community achieve awareness and understanding within Australia. For more information about advocacy and its forms check out our Advocacy page.
Reach out to our support coordinators or your individual advocacy needs.
Get in touch today for a confidential discussion about all things NF on 02 9713 6111 or by email on firstname.lastname@example.org
CHANGES TO THE SUPPORT ROLES AT CTF (Updated on 3 June 2019)
There have been a number of changes over the past couple of months with respect to the national support role provided by CTF. So, we thought it timely to give you a quick update on what is happening and where to go for support moving forward.
- Sally Maspero remains the Clinical Nurse Specialist at Westmead Children’s Hospital and works three days a week (Tuesday, Wednesday and Thursday)
- Zoe Rehbein has recently taken on the role of Support-Special Projects and works part-time in this capacity, based in Brisbane.
- Our Support Co-ordinator in Victoria, Natalie McCloughan has recently gone on maternity leave with the view to return early next year.
Natalie's role has been replaced by a fantastic woman named Kylie, an NF Mum herself with a wealth of experience in the health system. She will continue to run the NF Clinic at the Royal Melbourne’s Children’s Hospital, but as she was only available top work two days a week (Wed and Thu) she will only be taking calls regarding the clinic itself and not general support. These should be directed to our Sydney office on 02 9713 6111. There is also a gap of three weeks, between Nat leaving and Kylie starting. However, as the clinic is set up to run nearly 3 months ahead, there should be little inconvenience here.
If you need to change an appointment for the clinic in Melbourne, please call 03 9936 6268.
We also have two wonderful and experienced ladies who will be starting at the end of June who will be job sharing the National Support role that was previously occupied by Mona. They will do morning and afternoon shifts and will provide full Monday to Friday coverage. We will provide more details on this once they start, but we are very excited to have them both on the team.
Until they start at the end of June, for any support related calls please contact the Sydney office on 02 9713 6111. If it is of a general nature, we will endeavour to answer any questions you have and provide the information and resources you need. However, if it more of a technical or medical nature, we will take your details and refer them to Sally, our NF Clinical Nurse Specialist who works at the Children’s Hospital Westmead. Sally is known to many of you and has a wealth of NF experience. She will get back in touch with you as soon as she can and normally within 24 hours.
We appreciate your patience over this transition period, but we are happy to report that the number of hours dedicated to support has increased significantly with this new structure and has enabled us to bring new skills and energy into the team. We are confident you will see an improved offering once the new starters get up to speed.
If you have any questions, please contact us at email@example.com or call the office on 02 9713 6111.