Every day a new family receives a diagnosis of Fragile X, and the NFXF is here to support families with 1:1 consultations, resources, treatment recommendations, and educational materials. We empower families to successfully advocate for themselves and their children to meet the ongoing challenges of the Fragile X journey while securing federal research funding and legislative initiatives through our advocacy efforts to improve their quality of life every day.
We provide valuable tools and resources to families to help manage the day-to-day challenges of life with Fragile X. The NFXF is the global leader in providing relevant and cutting-edge Fragile X content with our extensive digital resources, virtual conference sessions, webinars and videos, available to the entire Fragile X community.
We facilitate research activities for families and professionals, underlining their value in the research process and how their active participation advances effective treatments and a cure. The NFXF launched the NFXF Research Readiness Program to help industry partners design clinical trials that consider the needs of Fragile X patients and families first, while also identifying more successful targeted outcome measures. Helping patients and their families understand the value of research and their participation is addressed in our newest e-book Fragile X Research 101.
We seek to improve access and availability of informed treatment options to promote knowledge for all patients with Fragile X. To better connect families with research opportunities that will ultimately provide better treatments for Fragile X and eventually a cure, we host MyFXResearch, a website portal that provides searchable participation information, all in one convenient location.