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.
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.
Advocating on Your Behalf
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.
Lobbying for the NF Community
Together we are stronger. Always.
The CTF has successfully lobbied government on behalf of the NF Community resulting in some significant improvements in service provision.
Most recently, 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. 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.
The CTF regularly submits grant applications for funding to enhance NF services. For example, a recent successful grant application will significantly reduce waiting times for children at the NF Learning Disorders Clinic at Westmead Hospital and another allowed us to add a Developmental Paediatrician session to our NF Clinic at RMCH.
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.
Educating the Medical Community
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.
Every 18-24 months, the CTF hosts a Clinical Symposium for NF Specialists, which provides information sharing and networking opportunities. The latest 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.
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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