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Printable Resources

Printable ResourcesDany Petraska2024-05-01T18:32:02-04:00

Printable Resources

Treatment Recommendations

The treatment and intervention recommendations for the three primary Fragile X-associated conditions —FXS, FXTAS, and FXPOI— are written by professionals, with input from parents and other caregivers. The target audience is families, caregivers and those with the condition. The documents can also be used to inform professionals who are not overly familiar with Fragile X.

The NFXF’s Treatment Recommendations are not formal scientific papers and are not considered formal “Guidelines;” they are summaries that communicate existing knowledge and intervention strategies in a more family-friendly way than papers written by and for professionals. The content is generally based on expert opinion and consensus by those who have extended experience in the Fragile X field. Wherever possible, the content also includes data and scientific evidence-based recommendations. Parents, family members and other caregivers are encouraged to read and share the documents. Scientific papers are referenced in the documents for those who wish to further explore the literature.

Note: Some are also available in Spanish (below the English versions) with more coming. You can also read all the treatment recommendations online.

English

Language in Fragile X Syndrome

Language in Fragile X Syndrome

An Introduction to Assessing Children with Fragile X Syndrome

An Introduction to Assessing Children with FXS

Autism Spectrum Disorder in Fragile X Syndrome

Understanding Autism Spectrum Disorder in FXS

Behavioral Challenges in Fragile X Syndrome

Behavioral Challenges in FXS

The Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome

The Use of Complementary and Alternative Therapies in the Treatment of FXS

General Educational Recommendations for Fragile X Syndrome

General Educational Recommendations for Students with FXS

Early Childhood Developmental and Educational Recommendations for Children with Fragile X Syndrome

Early Childhood Developmental and Educational Recommendations for Children with FXS

Educational Recommendations for Fragile X Syndrome — Elementary School

Educational Recommendations for FXS — Elementary School

Educational Recommendations for Fragile X Syndrome — Middle and High School

Educational Recommendations for FXS — Middle and High School

Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)

Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)

Fragile X Primary Ovarian Insufficiency (FXPOI)

Fragile X Primary Ovarian Insufficiency (FXPOI)

Genetic Counseling and Family Support

Genetic Counseling and Family Support

Hyperarousal in Fragile X Syndrome

Medications for Individuals with Fragile X Syndrome

Medications for Individuals with FXS

Mosaicism in Fragile X Syndrome

Physical Problems in Fragile X Syndrome

Seizures in Fragile X Syndrome

Sensory Processing and Integration Issues in Fragile X Syndrome

Sensory Processing and Integration Issues in FXS

Sleep in Children with Fragile X Syndrome

Sleep in Children with FXS

Toileting Issues in Fragile X Syndrome

Transition to Adult Services for Individuals with Fragile X Syndrome

Transition to Adult Services for Individuals with FXS

Spanish

Desafíos Conductuales en el Síndrome del Cromosoma X Frágil

Desafíos Conductuales en SXF

Medications for Individuals with Fragile X Syndrome

Medicamentos Para Personas Con Síndrome Del Cromosoma X Frágil

Insuficiencia Ovárica Primaria Asociada al Cromosoma X Frágil

Insuficiencia Ovárica Primaria Asociada al Cromosoma X Frágil (FXPOI)

Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)

Síndrome de Temblor/Ataxia Asociado al X Frágil (FXTAS)

Ebooks

Adults with Fragile X Syndrome: Making a Better Tomorrow

From the Transition to Adult Services to Thriving in the Adult World

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!

Fragile X 101

Fragile X 101: A Guide for the Newly Diagnosed and Those Already Living with Fragile X

This guide helps answer questions about common physical, cognitive, and behavioral issues. You’ll also learn how Fragile X is inherited, the various treatment options available, how females are affected vs. males, and the support you can receive from the NFXF.

Fact Sheets

Fragile X Fact Sheet

Fragile X Fact Sheet in English

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. It also includes facts on the prevalence and diagnosis of Fragile X, contact information for the NFXF, and answers the questions, what conditions benefit from Fragile X research? And, is there a cure?

31 Sharable Fragile X Facts

31 Sharable Fragile X Facts

Fragile X is complex, and it can be challenging to explain. That’s why we developed a set of facts you can use as talking points for Fragile X Awareness Month in July … and all year long!

State-Specific Fact Sheets

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.

What is Fragile X?

What is Fragile X?

In a two-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. 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 are the treatments for Fragile X.