LINKS Groups and Parent Contacts - Fragilex.org

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	L. I. N. K.S. Linking Individuals in Knowledge and Support A program of the What is the NFXF LINKS Program? NFXF LINKS is the official volunteer program of the National Fragile X Foundation. NFXF LINKS Leaders establish groups to provide families and individuals affected by Fragile X and its associated disorders (FXD) a regional and local point of contact and serve as the volunteer extension of the National Fragile X Foundation. What are the Goals of the NFXF LINKS Program? The NFXF believes that it is most important for there be local groups and contacts available in all areas of the country. The more local contacts we have, the better able we are to put people in touch with those "who have been there". Family Support: to help local and regional families better understand and cope with the diagnosis of FXD Awareness and Education: to seek out and/or create opportunities to raise general awareness about FXD and to educate families and professionals about the disorders and treatment options Fundraising: to support local activities and to help fund NFXF research, advocacy, support and education programs and services Advocacy: to support the national advocacy campaign and local grassroots efforts FX Clinics: to establish and maintain effective working relationships with FX Clinics and to increase public awareness and access to clinics LINKS Leaders Responsibilities LINKS Leaders are defined as one or more individuals united by the common mission of providing emotional and informational support, creating awareness and educational opportunities about Fragile X, raising money and promoting and supporting federal and local advocacy efforts. Learn More Parent and Professional Contact Responsibilities Parent Contacts are parents who agree to have their contact information made available to other parents and or individuals in their area, especially those with newly diagnosed children. Learn More Professional Contacts include knowledgeable physicians, therapists, educators, and counselors as well as their respective institutions and also agree to have their contact information made available to anyone in their area. Learn More Current LINKS Groups and Parent/Professional Contacts Directory Map Learn More LINKS Leader Guidelines Parent/Professional Contact Information Contact Us For more information and/or to request an application please Contact Us or call 800-688-8765. Top of Page

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