Printable Resources
- Treatment Recommendations (English) — Expert recommendations for the three primary Fragile X-associated disorders—FXS, FXTAS, and FXPOI.
- Treatment Recommendations (Spanish) — Recomendaciones de tratamiento de expertos para los tres trastornos primarios asociados con X frágil: SXF, FXTAS y FXPOI. (Algunos están disponibles en español, y vendrán más).
- Info Series (English) — Print-ready information flyers to share with others, such as clinicians, friends, other students, or teachers.
- Info Series (Spanish) — Folletos de información listos para imprimir para compartir con otros, como médicos, amigos, otros estudiantes o maestros.
- Ebooks — Our Adults With FXS and Fragile X 101 ebooks.
- Fact Sheets — Generic and state-specific facts sheets.
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
FXS, language
Language in Fragile X Syndrome
FXS, assessment
An Introduction to Assessing Children with FXS
FXS, autism
Understanding Autism Spectrum Disorder in FXS
FXS, behavior
Behavioral Challenges in FXS
FXS, therapy
The Use of Complementary and Alternative Therapies in the Treatment of FXS
FXS, education
General Educational Recommendations for Students with FXS
FXS, education
Early Childhood Developmental and Educational Recommendations for Children with FXS
FXS, education
Educational Recommendations for FXS — Elementary School
FXS, education
Educational Recommendations for FXS — Middle and High School
FXTAS
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
FXPOI
Fragile X Primary Ovarian Insufficiency (FXPOI)
FXD, counseling
Genetic Counseling and Family Support
FXS, hyperarousal
Hyperarousal in FXS
FXS, medications
Medications for Individuals with FXS
FXS, mosaicism
Mosaicism in FXS
FXS, physical
Physical Problems in FXS
FXS, seizures
Seizures in FXS
FXS, sensory
Sensory Processing and Integration Issues in FXS
FXS, sleep
Sleep in Children with FXS
FXS, toileting
Toileting Issues in FXS
FXS, adulthood
Transition to Adult Services for Individuals with FXS
Spanish
SXF, conductuales
Desafíos Conductuales en SXF
SXF, medicamentos
Medicamentos Para Personas Con Síndrome Del Cromosoma X Frágil
FXPOI
Insuficiencia Ovárica Primaria Asociada al Cromosoma X Frágil (FXPOI)
FXTAS
Síndrome de Temblor/Ataxia Asociado al X Frágil (FXTAS)
From Our Info Series
All of our Info Series are available to read online and as a PDF download (in both English and Spanish) designed to be easily printable on your home or office printer.
English
Spanish
Ebooks
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: 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
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
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
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?
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.