Reading
Explore articles, reports, and personal reflections that shed light on life with Neurofibromatosis (NF). These pieces offer insight, awareness, and understanding. From research summaries to real stories, helping you learn more and feel connected to the NF community.
NF1 Project
The NF1 Project is a research initiative focused on understanding the genetic factors behind the number and severity of cutaneous neurofibromas in individuals with Neurofibromatosis Type 1 (NF1).
It collects data through surveys, skin photographs, and genetic samples to identify why some people develop more tumors than others. The goal is to support future treatment development, as no current therapy exists for these benign skin tumors.
Rare Care Centre Perth
Rare diseases massively impact the lives of an enormous number of children and families. In Western Australia alone, approximately 63,000 children and their families are affected. The burden of rare and undiagnosed disease is substantial for children and families.
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The Rare Care Centre was established to address these critical challenges. Envisioning a future where children with rare and undiagnosed disease and their families can live the best lives possible. The mission is to create innovative solutions for their unmet needs, navigating the complexities of the multiple government sectors and agencies, and coordinating care to ease the burden they carry.​
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