Browse our e-books and other PDFs and downloads.
E-Books
Fragile X 101
9 pages,
Updated 03/05/2024
This guide helps answer common physical, cognitive, and behavioral questions, plus the support you can receive from the NFXF. You’ll also learn how Fragile X is inherited, the treatment options available, and how females are affected vs. males.
Research 101: The Ultimate Guide for All Families Living with Fragile X
38 pages,
Updated 10/20/2022
The NFXF has carefully curated the Fragile X-specific information you need to make important decisions for yourself and your family: what protections are in place, what you may be asked to do, what NFXF is doing to make sure your voice is heard during all treatment development, and more!
Adults with Fragile X Syndrome: Making a Better Tomorrow
93 pages,
Updated 11/25/2019
We’ve built the ultimate guide to transitioning into and continuing to care for adults with Fragile X syndrome. Our free ebook helps you — parents and caregivers — make a better tomorrow for adults with Fragile X syndrome. They deserve it!
Lesson Planning Guide for Students with Fragile X Syndrome
198 pages,
Updated 01/01/2004
A wealth of practical information that includes background on FXS, descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for children with FXS at a variety of developmental levels.
Men’s Health & the Fragile X Premutation
32 pages
Information on what the premutation is, how it works, the symptoms you can expect, who should be tested (and how), and more. From the Emory University School of Medicine, and made possible through funding from the Fragile X Association of Georgia.
Women’s Health & the Fragile X Premutation
29 pages
Information on inheritance, FXPOI, FXTAS, family planning, resources, a health worksheet, and more. From the Emory University School of Medicine, and made possible through funding from the NFXF and the Fragile X Association of Georgia.
Checklists
Transitioning to Adulthood Checklist
5 pages,
Updated 04/08/2025
Transitioning into adulthood can be an overwhelming task. We’re here to help! Here is a helpful checklist of things to consider as your loved one with Fragile X syndrome ages.
Care Plan Checklist
1 pages,
Updated 12/01/2021
These items are recommended by most primary care physicians as part of a general preventive health screen in accordance with health authority guidelines for all individuals. (Source: Transition to Adult Services for Individuals with Fragile X Syndrome)
IEP/IFSP Checklist
1 pages,
Updated 01/01/2025
An IEP is a legal document that guides a child’s specially designed educational program and services. It is developed by a multidisciplinary team that includes teachers, parents, and the student (if appropriate based on age). (Source: Educational Recommendations for Fragile X Syndrome: Elementary School, Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome)
Educational Strategies for Students With Fragile X Checklist
2 pages,
Updated 08/01/2012
Strategies for educators that are most useful in the classroom when educating children with FXS. (Source: General Educational Recommendations for Students with Fragile X Syndrome)
Health Watch Table for Fragile X Syndrome
4 pages,
Updated 10/01/2012
This is also found in our Physical Problems in Fragile X Syndrome treatment recommendation, a consensus of the Fragile X Clinical & Research Consortium.
Advocacy Newsletter
Fragile X Advocacy Newsletter — June 2025
4 pages,
Updated 06/30/2025
News, how to make an impact from home, understanding federal and state advocacy, upcoming key opportunities, sharing your lived experiences, and state advocacy tips.
Fragile X Advocacy Newsletter — April 2025
3 pages,
Updated 04/01/2025
News, advocacy accomplishments, Fragile X included in the PRMRP list for FY25, NFXF federal research funding & legislative policy priorities, current topics and legislative priorities, plus legislation we’re monitoring.
Fragile X Advocacy Newsletter — October 2024
3 pages,
Updated 10/01/2024
News, advocacy accomplishments, Rare Across America, Accelerating Kids’ Access to Care Act (AKACA), continued resolution information, current topics and legislative priorities, plus legislation we’re monitoring.
Fragile X Advocacy Newsletter — June 2024
3 pages,
Updated 06/03/2024
News, advocacy accomplishments, Fragile X included in the PRMRP list for FY24, Accelerating Kids’ Access to Care Act (AKACA), supplemental security income (SSI) bills, current topics and legislative priorities, plus legislation we’re monitoring.
Fragile X Advocacy Newsletter — November 2023
3 pages,
Updated 11/04/2024
News, advocacy accomplishments, Fragile X Syndrome included IN economic impact study, current topics and legislative priorities, plus legislation we’re monitoring.
Fragile X Advocacy Newsletter — July 2023
3 pages,
Updated 07/04/2023
News, advocacy accomplishments, telemedicine and telehealth update, current topics and legislative priorities, plus legislation we’re monitoring.
Adulthood & FXS
Adults with Fragile X Syndrome: Making a Better Tomorrow
93 pages,
Updated 11/25/2019
We’ve built the ultimate guide to transitioning into and continuing to care for adults with Fragile X syndrome. Our free ebook helps you — parents and caregivers — make a better tomorrow for adults with Fragile X syndrome. They deserve it!
Transitioning to Adulthood Checklist
5 pages,
Updated 04/08/2025
Transitioning into adulthood can be an overwhelming task. We’re here to help! Here is a helpful checklist of things to consider as your loved one with Fragile X syndrome ages.
Fact Sheets
Fragile X Fact Sheet
1 pages,
Updated 04/13/2023
In a one-page format, this fact sheet defines the Fragile X group of disorders — Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency.
X Frágil Hoja Informativa (Fragile X Fact Sheet)
1 pages,
Updated 04/13/2023
En formato de una página, esta hoja informativa define el grupo de trastornos del síndrome del cromosoma X frágil: síndrome del cromosoma X frágil, síndrome de temblor/ataxia asociado al síndrome del cromosoma X frágil e insuficiencia ovárica primaria asociada al síndrome del cromosoma X frágil.
What is Fragile X?
2 pages,
Updated 04/13/2023
This two-page fact sheet defines the Fragile X group of disorders—Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency. It also includes a list of Fragile X facts, contact information for the NFXF, and answers the questions of how Fragile X is inherited and what the treatments are for Fragile X.
Genetic Testing for Fragile X FMR1-Associated Conditions Fact Sheet
2 pages,
Updated 04/15/2025
Genetic testing options are something you may discuss with your healthcare provider. It’s important to understand what each test can reveal, the potential risks, and how the results may impact you and your family. Everyone’s situation is unique, so having clear information can help you make informed decisions for yourself and your family.
Genetic Counselors Fact Sheet
2 pages,
Updated 04/15/2025
Genetic counselors help individuals and families understand complex genetic information, interpret test results, and guide informed decision-making. This document outlines the role of a genetic counselor, the different types of genetic counselors, and when it may be helpful for you or your family to seek genetic counseling.
Genetics of Fragile X Fact Sheet
1 pages,
Updated 04/15/2025
Learn and share how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Fragile X Premutation Fact Sheet
2 pages,
Updated 04/15/2025
The Fragile X premutation refers to an atypical expansion of the CGG sequence in the FMR1 gene, typically ranging from 55 to 200 repeats. This expansion is used as a risk identifier for Fragile X premutation-associated conditions. While Fragile X syndrome is considered a rare genetic condition, the premutation is not classified as rare. Ongoing research continues to explore additional health risks that may be linked to the FMR1 premutation.
Fundraising Fact Sheet
1 pages,
Updated 11/01/2023
Do you need a printable one-pager with information about Fragile X so donors can make an impact on our mission? We have that!
State Fact Sheets
For use on Advocacy Day (or any day), we created these one-pagers to help introduce someone to Fragile X, including the number of affected individuals — constituents — currently residing in each state.
Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virgina
Washington
West Virginia
Wisconsin
Wyoming
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virgina
Washington
West Virginia
Wisconsin
Wyoming
Handouts & Templates
10 Things Everyone Should Know About Fragile X Syndrome
4 pages,
Updated 04/17/2025
Strengths, challenges, and how to make the most of any experience.
10 Things Everyone Should Know About Fragile X Syndrome (Customizable)
5 pages,
Updated 04/17/2025
Strengths, challenges, and how to make the most of any experience —customizable. Share tips and tricks on how each thing relates to your loved one with FXS!
Choice Board Template
1 pages,
Updated 04/17/2025
This offers a set of preferred options, helping increase independence and reduce frustration around communication. Works well for snack choices, playtime activities, and picking clothing or shows.
Daily Visual Schedule Template
1 pages,
Updated 04/17/2025
Helps show what’s happening now and what comes next. This can hep reduce transition struggles and help the person feel more in control. Works great for morning or bedtime routines, school or therapy schedules, and daily home routines.
First-Then Board
1 pages,
Updated 04/17/2025
Great for helping with transitions or when motivation is needed. Shows a task followed by a reward or preferred activity. Works well for getting through less preferred tasks, managing transitions, and reinforcing expectations.
Common Strengths of Individuals with Fragile X Syndrome
3 pages,
Updated 06/30/2025
People with Fragile X Syndrome (FXS) are unique individuals who bring warmth, creativity, and heart to the world around them. While FXS can come with challenges, it also comes with strengths. Here are just a few.
Your In-Person Visit to a Fragile X Clinic
5 pages,
Updated 04/16/2025
A quick guide to visiting a Fragile X clinic, including how to begin the process, questions to ask, what you’ll need to share with the clinic, and what to expect.
School Resources
Lesson Planning Guide for Students with Fragile X Syndrome
198 pages,
Updated 01/01/2004
A wealth of practical information that includes background on FXS, descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for children with FXS at a variety of developmental levels.
IEP/IFSP Checklist
1 pages,
Updated 01/01/2025
An IEP is a legal document that guides a child’s specially designed educational program and services. It is developed by a multidisciplinary team that includes teachers, parents, and the student (if appropriate based on age). (Source: Educational Recommendations for Fragile X Syndrome: Elementary School, Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome)
Educational Strategies for Students With Fragile X Checklist
2 pages,
Updated 08/01/2012
Strategies for educators that are most useful in the classroom when educating children with FXS. (Source: General Educational Recommendations for Students with Fragile X Syndrome)
For Professionals
Medical Coding for Fragile X FMR1-Associated Conditions For Professionals
1 pages,
Updated 04/15/2025
We have compiled a list of possible procedural, service, and diagnostic codes that might be used in your practice to order FMR1/Fragile X testing and/or provide a formal diagnosis.
Lesson Planning Guide for Students with Fragile X Syndrome
198 pages,
Updated 01/01/2004
A wealth of practical information that includes background on FXS, descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for children with FXS at a variety of developmental levels.
Sleep in Children with Fragile X Syndrome — For Your Care Team
14 pages,
Updated 04/01/2025
Detailed descriptions of the tools used to evaluate sleep disturbances, which you can print and share with your doctor or other care team members.
Assessment of Fragile X Syndrome for Clinicians
60 pages,
Updated 05/01/2021
Taken together, the clinical assessment of individuals with FXS must be comprehensive, accommodate the unique aspects and range of the FXS phenotype, and utilize tools that are appropriate (feasible, scorable, and valid) for use in FXS and commensurate with their developmental level.
Patient-Focused Drug Development Meeting Final Report
Voice of the Patient Report: A Patient-Focused Drug Development Meeting for Fragile X Syndrome
81 pages,
Updated 03/03/2022
This report represents the summary composed by the National Fragile X Foundation as a result of an externally-led Patient-Focused Drug Development meeting held virtually on March 3, 2021. This report reflects the host organization’s account of the perspectives of patients and caregivers who participated in the public meeting.
Printable Awareness & Emergency Cards
Fragile X Syndrome Awareness Cards
6 pages,
Updated 06/18/2025
The download includes an awareness card for the person with Fragile X syndrome, one for a family member of someone with FXS, and an emergency card to use with strangers or responders.
Fragile X-Associated Tremor/Ataxia Syndrome Awareness Cards
4 pages,
Updated 06/18/2025
The download includes an awareness card for the person with FXTAS, and one for a family member of someone with FXTAS.
Research
Research 101: The Ultimate Guide for All Families Living with Fragile X
38 pages,
Updated 10/20/2022
The NFXF has carefully curated the Fragile X-specific information you need to make important decisions for yourself and your family: what protections are in place, what you may be asked to do, what NFXF is doing to make sure your voice is heard during all treatment development, and more!
Zoom Backgrounds
Fragile X Awareness Zoom Virtual Backgrounds
Video meetings offer a unique opportunity to raise Fragile X awareness. By using a custom virtual background, you can raise awareness on each and every meeting. It will prompt people to ask about it, and if not, make them aware of it.
View each background image below, and we also have links to instructions for adding backgrounds to Zoom or Teams. Note that two of them are video files that add some subtle motion to the background image. Not all computers support video virtual backgrounds.
You may download the images and movie files individually, or fill out our short form below and we’ll email you the zip file containing all of the files.
Get All the Zoom Backgrounds
Links to More
Some of our content is available as PDFs, many with Spanish versions.
- Advocacy Day Newsletters
- Treatment Recommendations
- 31 Shareable Fragile X Facts
- Información en Español