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Fragile X Syndrome - Services & Other Resources

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Information & Support

For Parents and Patients

Fragile X syndrome (MedLinePlus)
Introduction and links to a variety of reliable sources of information about FXS, from the National Library of Medicine and National Insitutes of Health.

Mental Retardation Association of Utah (MRAU)
This non-profit supports volunteer activities; provides information and referral services; provides education, newsletters, and conferences; and helps families with guardianship information forms.

Utah Parent Center
This statewide non-profit organization, founded in 1984, provides training, information, referral and assistance to parents of children and youth with all disabilities, including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities. The Center provides information on support and advocacy for families of children with special health care needs.

Support

FRAXA
A national organization providing research and support for individuals with fragile X syndrome and their families.

National Fragile X Foundation
Information and support from the National Fragile X Foundation

National Fragile X Foundation
A non-profit organization run by parents of children with fragile X syndrome. This organization supports research into finding a cure for fragile X syndrome and supports families with children with fragile X syndrome.

For Professionals

Developmental Behavioral Pediatric update course (dbpeds.org)
Slides from lectures given at the DBPeds Prep Course, 2008, with various links, including genetic cases, learning disabilities, sleep disorders, and others.

FMR-1-related disorders (GeneReviews)
Excellent in-depth information regarding fragile X including diagnosis, testing, pathophysiology

Fragile X testing (GeneTests)
A national list of clinical laboratories providing genetic testing for fragile X syndrome and other FMRI-related disorders, on www.genetests.org.

Patient Education

Fragile X syndrome (MedLinePlus)
Introduction and links to a variety of reliable sources of information about FXS, from the National Library of Medicine and National Insitutes of Health.

Services

Adaptive Recreation

See all Adaptive Recreation services providers (43) in our database.

Behavioral Programs

See all Behavioral Programs services providers (26) in our database.

Career Counseling

See all Career Counseling services providers (113) in our database.

Child Psychiatry

See all Child Psychiatry services providers (19) in our database.

Child Psychology

See all Child Psychology services providers (52) in our database.

Developmental Pediatrics

See all Developmental Pediatrics services providers (2) in our database.

Disability Employment

See all Disability Employment services providers (199) in our database.

Early Intervention Programs

See all Early Intervention Programs services providers (36) in our database.

Financial Support, Other

See all Financial Support, Other services providers (125) in our database.

Genetics, Prenatal

Perinatal Genetics, more info...
100 Mario Capecchi Drive
Salt Lake City, UT 84132
Phone: 801-585-1861
http://intermountainhealthcare.org/hospitals/primarychildrens/services/pages/Service.aspx?index=Genetics

See all Genetics, Prenatal services providers (4) in our database.

Group Homes

See all Group Homes services providers (33) in our database.

Independent Living

See all Independent Living services providers (108) in our database.

Learning Evaluations

See all Learning Evaluations services providers (10) in our database.

Occupational Therapy

See all Occupational Therapy services providers (27) in our database.

Pediatric Cardiology

See all Pediatric Cardiology services providers (2) in our database.

Pediatric Gastroenterology

See all Pediatric Gastroenterology services providers (2) in our database.

Pediatric Genetic Counseling

See all Pediatric Genetic Counseling services providers (4) in our database.

Pediatric Medical Genetics

See all Pediatric Medical Genetics services providers (3) in our database.

Pediatric Neurology

See all Pediatric Neurology services providers (3) in our database.

Pediatric Ophthalmology

See all Pediatric Ophthalmology services providers (5) in our database.

Pediatric Orthopedics

See all Pediatric Orthopedics services providers (2) in our database.

Pediatric Physical Medicine & Rehab

See all Pediatric Physical Medicine & Rehab services providers (6) in our database.

Physical Therapy

See all Physical Therapy services providers (31) in our database.

Prenatal Genetic Counseling/Diagnosis

See all Prenatal Genetic Counseling/Diagnosis services providers (1) in our database.

Recreation Programs/Activities

See all Recreation Programs/Activities services providers (177) in our database.

Respite Care

See all Respite Care services providers (45) in our database.

SSI, Supplemental Security Income

See all SSI, Supplemental Security Income services providers (8) in our database.

Services for People with Disabilities

See all Services for People with Disabilities services providers (66) in our database.

Social & Recreational Opportunities

See all Social & Recreational Opportunities services providers (29) in our database.

Speech/Language Therapy

See all Speech/Language Therapy services providers (35) in our database.

State Financial Agencies

See all State Financial Agencies services providers (56) in our database.

Vocational Education

See all Vocational Education services providers (158) in our database.

For other services related to this condition, browse our Services categories or search our database.

Studies

Clinical trials in Fragile X (clinicaltrials.gov)
Listing of current and recent studies related to Fragile X.

Fenobam study information (FRAXA)
Although in the early stages, fenobam, a slective mGluR5 antagonist, may be helpful in individuals with fragile X syndrome. So far, it has been tested only in adults.