Despite being more common than some widely recognised conditions like Cystic Fibrosis and Muscular Dystrophy, community knowledge and understanding of NF is low, even amongst some front-line medical professionals. Below is an overview of all of the ways that we are working to advocate for the needs of the NF community.
The Support Services Team are available to discuss any issues you may be having with schools, employers or health services and can assist with information and advocacy where appropriate.
As the CTF is a National organisation, case management services can’t be offered, but support can be provided in instances where advocacy is required. For example, Support Coordinators have written letters of support for NDIS applications or have contacted schools where there has been an ongoing issue for a child with NF.
NDIS Support Letters
This is part of individual advocacy, but specifically relates to accessing the National Disability Insurance Scheme (NDIS). As NF is not currently listed as a condition for NDIS purposes, we recognise that many families and individuals with the condition are either rejected access or reviews do not go to plan.
A letter of support from one of our Support Services Team (SST) can assist with outlining your specific issues and needs in context of NF and the NDIS. We have a proven track record and believe you will have a better chance success with your application, appeal or review.
To access this services, please contact us by email at email@example.com or by phone on 02 9713 6111.
Learning and Support Pathways
Navigating your way through school is challenging at the best of times, but when you have a chronic condition which requires significant time away from your studies for medical appointments, treatment or therapies, these challenges are magnified.
NF can have a significant impact on a person's cognitive, behavioural and emotional wellbeing.
In Australia, we have invested a significant amount into the development of research into cognitive development in NF1 patients, including:
- The Predictors of Autism in Neurofibromatosis Type 1: Development to Adolescence (PANDA)
- The link between Children with NF1 & Auditory Processing Deficits with Associated Speech Perception Problems
We have also increased funding to the Learning Clinic at Westmead with the support of the Nepean Business Network.
Bi-Annual NF Clinical Symposium
Every 2 years, the CTF hosts a Clinical Symposium for NF Specialists, which provides information sharing and networking opportunities. With the assistance of a medical advisory panel, the CTF develops a program of "hot topics" that are important to people working in the NF space.
If possible, an international keynote speaker is invited to join the conference and to share learnings from overseas that are relevant to local practitioners and researchers.
The most recent NF Symposium was held in Sydney in March 2020 and was attended by over 100 Australian health professionals, including medical specialists, nurses, geneticists, allied health professionals and scientists.
There were 14 presenters, including keynote speaker Professor Michael Fisher from The Children's Hospital of Philadelphia. The Symposium enabled young doctors and practitioners to increase their knowledge of NF and will ensure the next generation of researchers and clinicians are well connected with the CTF.
You can read more here.
Health Professional Training and Tools
The CTF strives to raise awareness of NF within the medical community and in the general community. We reach out to General Practitioners and other medical and health associations to provide information and resources to assist with the management and referral of patients to clinics and NF Specialists.
Resources are available online or by request to assist health professionals diagnose and manage patients with all forms of neurofibromatosis.
In an era where new NF-targeted therapies are coming through the research pipelines, it is important that the CTF remain involved in liaising with pharmaceuticals and government agencies.
We have relationships with companies like Roche and Astra Zeneca
The CTF has successfully lobbied government on behalf of the NF Community resulting in some significant improvements in service provision in recent years.
- In February 2021, the Minister for Health and Aged Care, The Hon. Greg Hunt MP, announced an $8 million investment into NF Research and to support the CTF.
The announcement comes after numerous discussions over the past 12 months with both Minister Hunt and our local MP, The Hon. Dr Fiona Martin, about the complexity of this condition, its lack of awareness of NF and how the NF community can be best supported moving forward.
With this investment, $7 million will be set aside within the Medical Research Future Fund (MRFF) as a dedicated NF Research Grant Opportunity. It will support ground-breaking research projects to develop new interventions and improve healthcare and outcomes for people living with NF. In addition to the MRFF research funding, the government will also provide $1 million over four years to the CTF to enable us to continue supporting and advocating for both adults and children living with NF.
- Through our support of RNSH NF Clinic and mutual advocacy efforts resulted in a new breast screening protocol being developed. This will enable women with NF1 aged 35-50 years (who are at increased risk of breast cancer) access to a free breast cancer screening program.
- In August 2020, our Support Services Team prepared a Submission in response to the Employment Issues Paper for The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
- In March 2021, our Support Services Team contributed to a submission made to the parliamentary inquiry into independent assessments for NDIS. The submission discussed the suitability of independent assessments for deafblind members of the community. You can read the submission here.
The CTF will continue to make representations to government to improve access to multi-disciplinary clinics, enable effective treatments to be available earlier, increase the number and availability of other services for people with NF, assist with programs and equipment at schools to help with learning difficulties along with seeking funding so we can expand the support services we offer.
Advocating for Increased Funding for Clinical Equipment
From time to time, we are in a position to assist clinical services with grants to fund much-needed equipment to assist in the management and treatment of people living with NF.
This has included:
- Lutronic Action Laser Machine at the Skin Clinic at Royal North Shore Hospital (RNSH). The laser reduces disfiguration of neurofibromas and has helped reduce waiting times considerably.
The Support Services Team works closely with the Marketing Team to assist in raising awareness of NF. This includes events and campaigns like Cupid’s Undie Run, NF Hero Challenge and NF Awareness Month.
In 2018-19, our campaigns were seen or heard by over 5 million people and experienced a 33% uplift in reach across our social media channels. Community fundraising increased over 75% in FY19.
Awareness on a Local Level
On a more local level, the CTF assists with opportunities for schools, corporate and community groups to engage and fundraise to help improve the life outcomes of people with NF.
Share Your Story
Sharing your story is a great way to raise awareness of Neurofibromatosis. It is an empowering experience and is a great way to make sure your voice and experiences are heard.
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