Advocacy for the NF Community
At NFAWA, advocacy means standing alongside individuals and families living with Neurofibromatosis. We work to raise awareness, promote understanding, and advocate for better support, care, and recognition for the NF community. Through education, lived experience, and community connection, we aim to ensure that people affected by NF are heard, valued, and supported.
Medicare Rebate to cover more of the In-Vitro Fertilisation (IVF) costs.
Advocated by Jessica Rangi
My name is Jessica Rangi, and I am writing to advocate for improved access to affordable, subsidised IVF for individuals and families affected by Neurofibromatosis (NF). I ask that this issue be given serious consideration at both state and federal levels.
Tell us your advocacy story!
We are looking for more advocates like you.
We invite you to share your advocacy stories about Neurofibromatosis (NF). Your experiences can inspire empower others in the community. Please reach out to us if you would like to be featured and help raise awareness for this important cause. We look forward to hearing from you!
Alexis is advocating for change in the health sector.
Advocate for Lived Experiences
Author of The Unexpected Carer
Believe and you will succeed!
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Driven by a commitment to ensuring the community voice is central to healthcare, Alexis's work focuses on bridging the gap between health organisations and the people that they serve. As a dedicated Health Consumer Representative, she has collaborated with research institutions and health services to provide strategic advice that improves systems, accessibility, and patient outcomes.
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Currently serving as the NFAWA Committee Secretary, she provides governance support, strategic direction for health consumers, and professional advocacy that is sustained at a high level. She is also learning how to synthesise complex medical research into accessible information to empower consumers to engage directly with health data and evidence-based policies.
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From managing local initiatives to drafting high level grant applications for the not for profit's growth, she is rooted in creating tangible benefits for the local community actively contributing to advisory panels and scholarship programs to foster professional leadership within the volunteer and health advocacy sectors. All in all, Alexis's advocacy is more than representation; it is about building a professional, collaborative framework where their lived experience of consumers leads to meaningful structural changes in the healthcare system.
Lisa is Advocating for her brother Andrew and an association that has been hidden for 35 years!
Meet Lisa Chambers! 💙💚
Lisa is the Community Development Coordinator at NFAWA, bringing passion, empathy, and dedication to her role in supporting the Neurofibromatosis (NF) community across Western Australia.
With a rich and varied professional background spanning IT project management in hospitals, clinical information analysis, hospitality and tourism both locally and abroad, and much more; Lisa brings a wealth of experience and a broad perspective to her work.
Beyond her professional achievements, Lisa is a devoted mum to a teenager with a rare genetic disorder and has much experience navigating healthcare and NDIS from a regional and city perspective. She also brings lived experience to her role, having supported her brother who lives with NF1. This personal connection drives her deep commitment to making a difference for others affected by NF, making this work not just a job, but a heartfelt mission.
Lisa is passionate about building strong and inclusive communities, encouraging conversations with neurological leaders and advocacy in clinical neurological networks. She looks forward to working alongside the NF community to create positive change and meaningful connections.