Updated February 2010
NICHCY is pleased to connect you with sources of information and assistance in Spanish on specific topics. This page is presented here in English and in Spanish to help both those who are looking for information in Spanish for themselves and those looking for Spanish materials to share with their Spanish-speaking families.
The list below isn't intended to be exhaustive of the Spanish-language resources on disability conditions available---but it will get you started!
If you are looking for NICHCY publications and products in Spanish, please visit Nuestros Productos y Publicaciones. We also invite you to share the news of NICHCY's Spanish website | NICHCY en español.
Alphabetical List
A ·
B ·
C ·
D ·
E · F ·
G ·
H · I · J · K·
L ·
M ·
N ·
O · P · Q ·
R ·
S ·
T · U · V · W · X · Y · Z
AD/HD (Attention-Deficit/Hyperactivity Disorder)
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The Americans with Disabilities Act (ADA)
- What's the ADA all about?
www.usdoj.gov/crt/ada/infoline.htm
Call the ADA Information Line at the U.S. Department of Justice, where Spanish speaking staff can answer your questions about the ADA: 1.800.514.0301 (Voice), 1.800.514.0383 (TTY).
English versions of many publications explaining the ADA are available online at: www.usdoj.gov/crt/ada/publicat.htm. Spanish language versions are available by calling the ADA Information Line. Examples of what's available include: ADA Questions and Answers (31 pages), A Guide to Disability Rights Laws (21 pages, covering 11 Federal laws that protect the rights of people with disabilities), A Guide for People with Disabilities Seeking Employment (2 pages), but there's much more!
- Child care and the ADA.
www.childcarelaw.org/
Want a quick reference to the ADA for child care providers? Want to know when a child care program is required under the ADA to admit a child with a disability? Visit the Child Care Law Center and find handy information. Spanish versions of many publications are available online from the publications menu, at:
http://www.childcarelaw.org/pubs-audience.shtml
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Asperger Syndrome
- Medical info in Spanish about Asperger Syndrome.
www.nlm.nih.gov/medlineplus/spanish/ency/article/001549.htm
From the Medical Library of the United States, courtesy of Medline Plus in Spanish, "Enfermedad de Asperger" briefly discusses, from a medical perspective, definition of AS, and its characteristics, alternate names, diagnostic exams, treatment, prognosis, and prevention.
- Criteria for Asperger Syndrome in Spanish.
http://biblioteca.consultapsi.com/DSM/Dsmdes.htm
This link will take you to the DSM criteria in Spanish (courtesy of a site in Argentina) for all five of the disorders under the umbrella of PDD.
- Fact sheet on AS in Spanish.
http://www.aacap.org/cs/root/facts_for_families/
informacion_para_la_familia/desorden_de_asperger_no_69
This fact sheet, called Desorden de Asperger, is courtesy of the American Academy of Child and Adolescent Psychiatry.
- The Spanish version of "When your child is diagnosed with an autism spectrum disorder."
http://www.iidc.indiana.edu/irca/Spanish/SDiagnosed.html
"Cuando su niño/niña es diagnosticado con alguno de los desórdenes en la gama del autismo" is the Spanish title of this publication from the Indiana Resource Center for Autism.
- El Síndrome de Asperger.
www.autism-society.org/site/PageServer?pagename=espanol_asperger
This description is courtesy of the Autism Society of America.
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Assistive Technology
- No place better than FCTD.
http://www.fctd.info/resources/index_es.php
FCTD is the Family Center on Technology and Disability. Look at all those beautiful resources about AT in Spanish.
- Here's a basic introduction to AT and communication.
http://www.pacer.org/publications/pdfs/ALL16s.pdf
The Alliance is the central technical assistance center for all of the Parent Training and Information (PTI) Centers in the U.S. The link above will take you to the Spanish version of "Simple, Inexpensive Devices Can Help in Communication" (Aparatos Simples y Baratos Pueden Ayudar en la Comunicación).
- How AT can help your child to be more active.
http://www.pbs.org/parents/inclusivecommunities/assistive_tech_sp.html
PBS offers many resources for parents of children with disabilities, including this brief called "Tecnología Asistida: Como La Tecnología Puede Ayudar A Su Niño A Ser Más Activo" (Assistive Technology: How Technology Can Help Your Children to Be More Active).
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Asthma / Allergies
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Auditory Processing Disorder
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Autism
- Autismo/PDD, NICHCY's factsheet on the autism spectrum.
http://www.nichcy.org/spanish/discapacidad/Pages/autismopdd.aspx
- How are the 5 disorders under the autism spectrum defined?
http://biblioteca.consultapsi.com/DSM/Dsmdes.htm
This link will take you to the DSM criteria in Spanish (courtesy of a site in Argentina) for all five of the disorders under the umbrella of PDD: autism, asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder (PDD).
- Autism spectrum disorders: A primer for parents and educators.
http://www.nasponline.org/resources/translations/autism_spanish.aspx
"Espectro de desórdenes de autismo" comes from NASP, National Association of School Psychologists.
- Try AutismOnline in Spanish.
http://www.autismonline.com/languages/spanish.htm
AutismOnline connects the parents of newly diagnosed children with autism and professionals working with these children with critical resources, support, and research information in their own language.
- Visit the Indiana Resource Center for Autism (IRCA).
http://www.iidc.indiana.edu/irca/fspanish.html
The IRCA offers a range of materials in Spanish on autism and related disorders, including "When your child is diagnosed with an autism spectrum disorder."
- NINDS is the National Institute on Neurological Disorders and Stroke.
www.ninds.nih.gov/disorders/spanish/autismo.htm
NINDS offers an extensive fact sheet on autism in Spanish.
- What the Autism Society of America has to say in Spanish.
http://www.autism-society.org/site/PageServer?pagename=autismo
Quite a bit, actually!
- Medical info in Spanish about autism.
http://www.nlm.nih.gov/medlineplus/spanish/ency/article/001526.htm
From the Medical Library of the United States, courtesy of Medline Plus in Spanish, "Autismo" briefly discusses, from a medical perspective, the definition of autism and its characteristics, alternate names, diagnostic exams, treatment, prognosis, and prevention.
- The child with autism, in Spanish.
http://www.aacap.org/cs/root/facts_for_families/
informacion_para_la_familia/el_nino_autista_no_11
This fact sheet, called El Niño Autista, appears online courtesy of the American Academy of Child and Adolescent Psychiatry.
- Looking at the genetics of autism (in Spanish).
http://www.exploringautism.org/spanish/
- On Rett syndrome.
http://www.nichd.nih.gov/publications/pubs/el_sindrome_de_rett_06_rev.pdf
Rett syndrome is placed clinically under the spectrum of pervasive developmental disorders (PDD), as is autism.
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Behavior
- NICHCY's behavior page in Spanish.
http://www.nichcy.org/spanish/temas/Pages/conducta.aspx
- General info about home discipline.
http://kidshealth.org/parent/en_espanol/emociones/discipline_esp.html
"Disciplinando a su Hijo" (Disciplining Your Child) takes a look at this critical subject by age groups: 0-2, 3-5, 6-8, 9-12, and 13 and up.
- Behavior as a form of communication: What does defiant behavior say, and what to do about it?
http://www.pbs.org/parents/inclusivecommunities/challenging_behavior2_sp.html
PBS offers many resources for parents of children with disabilities, including this brief called "Comportamiento Desafiante en Niños."
- Supporting children's social-emotional development and preventing challenging behaviors.
http://www.vanderbilt.edu/csefel/resources/what_works.html
Visit CSEFEL (Center on the Social and Emotional Foundations for Early Learning) and check out their What Works briefs, which describe practical strategies, provide references to more information about the practice, and include a one-page handout that highlights the major points of the Brief. Titles include "Helping Children Make Transitions between Activities" and "Helping Children Learn to Manage Their Own Behavior."
- Aggression in young children: Strategies for parents and educators.
http://www.nasponline.org/resources/translations/aggression_spanish.aspx
"La Agresión en los Niños Pequeños" comes from NASP, the National Association of School Psychologists.
- Looking for information on functional behavioral assessments?
www.pacer.org/parent/php/PHP-c79s.pdf
This is an 8-page brief in Spanish on functional behavioral assessment and positive behavioral interventions.
- A goldmine of information on positive behavior support.
http://www.pbis.org/spanish/main-es.htm
The Center on Positive Behavioral Interventions and Supports offers a Spanish side to its site on addressing behavior problems through positive behavioral supports (PBS). Find materials on improving behavior at home; offering behavior support in class, individually, or to the family, and conducting functional behavioral assessments.
- The role of schools in helping children with emotional or behavioral disorders.
www.air.org/cecp/promisingpractices/1998monographs/resprinvol3.htm
Read the Executive Summary (in Spanish) to the Center for Effective Collaboration and Practice's "The Role of Education in a System of Care: Effectively Serving Children with Emotional or Behavioral Disorders, Volume III."
- Children's bad habits.
http://www.guiainfantil.com/educacion/malascostumbres/indice.htm
"Las Malas Costumbres de los Niños" (Bad Habits) focuses on how bad habits are formed, then offers a series of resources pages on bad habits children may have (biting their nails, sucking their thumb, playing with their hair, picking their nose, and holding their breath) as a way of talking about how habits are formed and broken.
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Blindness / Visual Impairments
- NICHCY's 4-page fact sheet in Spanish.
http://www.nichcy.org/spanish/discapacidad/Pages/impedimentosvisuales.aspx
- Visit the National Eye Institute (NEI).
www.nei.nih.gov/health/espanol/index.asp
Tthe NEI was established by Congress in 1968. It conducts and supports research that helps prevent and treat eye diseases and other disorders of vision. Extensive information is available in Spanish on low vision, cataracts, macular degeneration, visual issues associated with diabetes, and glaucoma.
- Lots of info at NOAH!
www.noah-health.org/es/eye/
NOAH is the New York Online Access to Health. Its Web site in Spanish connects you to Spanish language resources from many different sources on visual impairment, including: basic information about the eye, a glossary of terms, low vision fact sheets, eye disorders, diagnosis, and treatments.
- Go here for a large list of eye-related issues in Spanish.
www.nlm.nih.gov/medlineplus/spanish/eyesandvision.html
Find out about the eye's anatomy and conditions such as astigmatism, cancer, problems with vision, including blindness, macular degeneration, and much more.
- The Blind Children's Center.
http://www.blindchildrenscenter.org/pubs.html
Information in Spanish can be ordered at low cost from the Blind Children's Center, including: the 12-page "Heart to Heart" (where parents of children who are blind and partially sighted talk about their feelings); the 28-page "Let's Eat: Feeding a Child with a Visual Impairment" (how to teach feeding skills to children with visual impairments); the 12-page "Move with Me" (a parent's guide to movement development for babies who are visually impaired); the 11-page "Talk to Me" (a language guide for parents of children who are visually impaired) and the 15-page sequel "Talk to Me II;" and the 28-page Selecting a Program" (a guide for parents of infants and preschoolers with visual impairments). Access an order form and see the costs for each of these at the link above.
- For grandparents of children with visual impairments.
www.spedex.com/napvi/index_sp.htm
National Association for Parents of Children with Visual Impairments (NAPVI) offers a mirror home page in Spanish that leads back to their English site. The Spanish publication In Celebration of Grandparenting (Celebrando El Ser Abuelos) is available to help grandparents of children with visual impairments or blindness better understand how they can engage constructively in direct and indirect support of their loved ones dealing with visual impairment. Find out more about this resource at: http://www.spedex.com/napvi/grandparent.html
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Cancer
- National Cancer Institute
http://www.cancer.gov/espanol
The link below will take you to the home page of NCI in Spanish. Lots of offerings here for Spanish-speaking families, including a 1.800 number they can call (1-800-422-6237 | 1-800-4-CANCER), descriptions of different types of cancer and their treatments, and (over the right of the home page) links to how to find help in their community (cómo encontrar recursos en su comunidad); financial aid for medical costs associated with cancer (ayuda económica para gastos relacionados con el cáncer); and support for caregivers (Apoyo para personas que cuidan a un ser querido con cáncer).
- American Cancer Society.
http://www.cancer.org/docroot/ESP/esp_0.asp
ACS, in Spanish. Again, lots of resources here, including a toll-free information line that Spanish-speaking families can call with their questions about cancer (1.800.227.2345).
- Brain tumors in children.
(Tumores cerebrales en niños.)
http://www.nlm.nih.gov/medlineplus/spanish/childhoodbraintumors.html
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Cerebral Palsy
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Childhood Disintegrative Disorder
- Criteria for CDD in Spanish.
http://biblioteca.consultapsi.com/DSM/Dsmdes.htm
This link will take you to the DSM criteria in Spanish (courtesy of a site in Argentina) for all five of the disorders under the umbrella of PDD.
- Visit the Indiana Resource Center for Autism (IRCA).
http://www.iidc.indiana.edu/irca/fspanish.html
The IRCA offers a range of materials in Spanish on autism and related disorders, including "When your child is diagnosed with an autism spectrum disorder."
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Culturally Appropriate Services
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D
Deaf/Blindness
- Need information on deaf-blindness?
http://nationaldb.org/ISProductos.php
The National Consortium on Deaf-Blindness (NCDB) has a long list of publications in Spanish, all on the page at the link above.
- Find your state's deaf-blind project.
http://nationaldb.org/ppStateDBProjects.php
NCDB can also connect you and yours with the project in your state that provides info, training, and resources regarding deaf-blindness. While these may or may not have information in Spanish, it's very good to know where your state's project is!
- More info on deaf-blindess.
http://www.unr.edu/educ/ndsip/spanish/spmain.html
The Nevada Dual Sensory Impairment Project offers quite a few resources in Spanish on deaf-blindness.
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Deafness / Hearing Impairments
- An introduction to hearing loss, including deafness, from NICHCY.
http://www.nichcy.org/spanish/discapacidad/Pages/sordera.aspx
For a quick read on hearing impairments, including deafness, and a list of helpful resources and organizations, try our fact sheet in Spanish.
- Heard of the EHDI, the Early Hearing Detection and Intervention program?
http://www.cdc.gov/ncbddd/ehdi/spanish/default.htm
The EHDI program is intended to identify children with hearing loss and intervene early to prevent later problems with communication. Universal newborn hearing screening is soooooooo important! Learn about EHDI at the link above. You may also be interested in sharing the article called "La evaluación de la audición en los recién nacidos es importante para su desarrollo" (Evaluating hearing in newborns is important to their development), available at:
http://www.cdc.gov/spanish/especialesCDC/reciennacidos/
- Find your state's EHDI program.
www.infanthearing.org/states/index.html
Working from a map of the U.S., click on your state and find the contact information for the person in your state that coordinates the early hearing detection and intervention program. Also find out what hospitals in the state report screening for hearing loss at least 90% of the birth/admissions at the hospital.
- Access a treasure trove of information.
www.nidcd.nih.gov/health/spanish/index.asp
Find out about an incredibly wide range of subjects on hearing at the National Institute on Deafness and Other Communication Disorders (NIDCD): aphasia, screening an infant's hearing, hearing aids, cochlear implants, communication options, tinnitus, ear infections, captioning, and much more.
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Hear-It en español.
http://spanish.hear-it.org/
Hear-It is a fount of information on hearing, loss of hearing, and hearing aids in English and in Spanish.
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La Audición de Mi Bebé.
http://www.audiciondelbebe.org/portada.asp
This site (My Baby's Hearing) is divided into three sections: hearing and amplification, language and learning, and parent to parent. |
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What's an auditory evaluation?
http://www.asha.org/public/hearing/testing/espanol_aud.htm
¿Qué es una evaluación audiológica? in Spanish, from ASHA.
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Diabetes
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Down Syndrome
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Epilepsy
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Evaluation for Special Education
- Wondering if your child's development is on track?
www.pbs.org/wholechild/spanish/abc/index.html
The typical developmental process children follow is described in PBS' online material called "El ABC del Desarrollo del Niño: Los Cinco Primeros Años de su Hijo: Hitos del Desarrollo" (the ABCs of Child Development). Four areas are discussed: physical development, social-emotional development, cognitive skills, and communication skills.
- How does the evaluation process go?
http://www.nichcy.org/Documents/Spanish%20pubs/bp1sp.pdf
NICHCY offers a short, easy-to-read explanation in Spanish of what's involved in evaluating children to see if they are eligible for special education services. Find "La Evaluación de Su Niño" (Your Child's Evaluation) at the link above.
- The evaluation process in detail, from NICHCY en español.
http://www.nichcy.org/spanish/procesos/Pages/evaluacion.aspx
- Here's a thorough overview.
http://www.pbs.org/parents/inclusivecommunities/special_education_sp.html
PBS offers many resources for parents of children with disabilities, including this brief called "Evaluación de Educación Especial: Lo que los Padres Deberían Saber y Preguntar" (Evaluation in Special Education: What Parents Should Know and Ask).
- What does evaluation mean to your child?
http://www.pacer.org/publications/pdfs/ALL11s.pdf
The Alliance is the central technical assistance center for all of the Parent Training and Information (PTI) Centers in the U.S. The link above will take you to the Spanish version of "Evaluation: What Does It Mean For Your Child?"
- NASP describes the basics of psychological testing.
www.naspcenter.org/espanol/
NASP is the National Association of School Psychologists. It offers two explanations in Spanish about testing, Psychological Testing and Psychological Evaluation, both of which will be helpful to parents when the school asks permission to evaluate their child.
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Genetics
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Health Care and Health Information
- Health insurance.
www.insurekidsnow.gov/
Did you know that each state has a health insurance program for children? Children who don't have health insurance right now are very often eligible for state medical coverage. The insurance is available to children in working families, including families that include individuals with a variety of immigration status.
----Basic description of the program in Spanish can be found at:
http://www.insurekidsnow.gov/toolkitdocuments/backgrounderspanish.pdf
---To find out what your state's policies are, what's covered, and how to apply, sall 1.877.543.7669 or visit the map available at:
http://www.insurekidsnow.gov/state/index.html
- For government and nonprofit health and human services information on the Internet.
www.healthfinder.gov/
Healthfinder connects you with a range of health-related resources. The same service is available in Spanish, at: www.healthfinder.gov/espanol/
- Su Familia: The National Hispanic Family Health Helpline.
http://www.hispanichealth.org/sufamilia/
Call 1.866.783.2645 and connect to free, reliable, and confidential health information in Spanish and English. Give your zip code and be referred to one of over 12,000 local health providers, including community and migrant health centers. Fact sheets in Spanish are also available online on a wide range of health topics and conditions. Go to the link below and use the drop-down menu to find them and more.
http://www.hispanichealth.org/folletos/
- Information about health topics of all kinds.
http://medlineplus.gov/spanish
This site is a service of the U.S. National Library of Medicine and offers everything from an online medical encyclopedia to interactive tutorials for patients.
- More information about health topics of all kinds.
http://familydoctor.org/online/famdoces/home.html
The American Academy of Family Physicians provides this Spanish site of "health information for the whole family."
- NOAH: New York Online Access to Health.
www.noah-health.org/
NOAH offers visitors online access to full-text health information on syndromes and rare disorders. To find this information in Spanish, select (click on) "Temas de salud" on the home page. You'll find info on health conditions (e.g., asthma and allergies, blood disorders, cancer, diabetes, digestive illnesses, hearing and balance, eyes and vision) and health issues (e.g., alternative medicine, diagnostic tests and interventions).
- Birth defects and genetic conditions.
www.nacersano.org
Nacer Sano is the Spanish site of the March of Dimes. In their online Biblioteca de Salud (Health Library), you'll find information in Spanish on a wide range of birth defects and genetic disorders, including: sickle cell anemia, chromosomal anomalies, heart defects, Tay-Sachs, spina bifida, cerebral palsy, hearing loss, Down syndrome, Marfan syndrome, and Fragile X syndrome.
- Lookin' for information about respiratory illnesses and problems with the immune system?
http://www.nationaljewish.org/healthinfo/espanol/espagnol.aspx
Visit National Jewish Health. In addition to information on asthma and allergies, you'll find materials in Spanish on AIDS, cancer, tuberculosis, emphysema, and illnesses of the immune system, such as lupus.
- What does NIH (National Institutes of Health) have to say in Spanish?
http://salud.nih.gov
A lot! Go to the address above and you'll see how much.
- Visit KidsHealth in Spanish.
http://kidshealth.org/parent/en_espanol/esp_land_pg/
spanish_landing_page.html
The link above will take you to the Spanish home page, from which you can choose to investigate health-related questions and conditions until the cows come home.
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Hepatitis A, B, and C
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Learning Disabilities
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Mental Health / Mental Illness
- NICHCY's fact sheet in Spanish on emotional disturbance.
http://www.nichcy.org/spanish/discapacidad/Pages/trastornosemocionales.aspx
- American Academy for Child and Adolescent Psychiatry.
www.aacap.org/cs/root/facts_for_families/informacion_para_la_familia
AACAP offers numerous information fact sheets on emotional disorders (not copyrighted) in Spanish. All are accessible at the link above.
- NAMI | National Alliance for the Mentally Ill.
www.nami.org/template.cfm?section=NAMI_en_espa%F1ol
At NAMI in Spanish, you'll find information fact sheets across the spectrum of mental health issues and conditions and an (800) national information line about programs, chapters, and support groups.
- Centro de Apoyo.
http://www.apa.org/centrodeapoyo/index.aspx
Visit the American Psychiatric Association's Help Center in Spanish.
- Mentesana.com.
http://healthinmind.com/Spanish/default.htm
The HealthinMind and Mentesana sites are organized around the diagnostic categories of the "Diagnostic and Statistical Manual of Mental Disorders" (fourth edition, DSM-IV). From the Spanish home page, you can access info on different emotional disorders, mental health services, and much more.
- SAMHSA's National Mental Health Information Center.
http://nmhicstore.samhsa.gov/espanol/default.aspx
The above link will take you to SAMHSA's National Mental Health Information Center---specifically, to the page where its Spanish publications are listed and can be read or downloaded. You'll also notice a link to National Help Lines in Spanish that individuals can call for help and more information about specific mental health conditions or topics.
http://nmhicstore.samhsa.gov/espanol/lineas.aspx
- Spanish fact sheets on several mental disorders.
http://www.nimh.nih.gov/health/publications/espanol/spanish-listing.shtml
The National Institute of Mental Health (NIMH) offers a variety of publications in Spanish on emotional disturbances, including depression, schizophrenia, anxiety disorders, panic disorder, AD/HD, obsessive-compulsive disorder, post-traumatic stress disorder, and bipolar disorder.
- Information about mental health and behavior disorders.
www.nlm.nih.gov/medlineplus/spanish/mentalhealthandbehavior.html
Medline offers information in Spanish about AD/HD, eating disorders, and behavior problems, as well as fact sheets about anxiety, depression, obsessive-compulsive disorder, panic, phobias, Asperger's syndrome, and bipolar disorder.
- Information for children about their emotions.
http://kidshealth.org/PageManager.jsp?dn=familydoctor&lic=44&ps=303&cat_id=20110
From Family Doctor comes this page of Spanish-language resources for children on such topics as managing anger, confronting fear, 10 steps to managing stress, self-esteen, phobios, stuttering, and much more.
- Information on depression, schizophrenia, and bipolar.
http://www.mentalhealthamerica.net/go/en-espanol
Mental Health America offers several fact sheets in Spanish, including: What is Depression?; Schizophrenia: What You Need to Know; and Bipolar Disorder: What You Need to Know.
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Muscular dystrophy
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N
Neurofibromatosis
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Orthopaedics
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- NOAH: New York Online Access to Health.
http://www.noah-health.org/es/genetic/
NOAH offers visitors online access to full-text health information on syndromes and rare disorders.
- Genetics, birth defects, and the March of Dimes.
http://nacersano.org/centro/9388.asp
On the link above, scroll down the page to "Defectos de Nacimiento y Condiciones Genéticas" (birth defects and genetic conditions) and see the list of conditions covered. Is the one of your interest there?
- Genetic conditions, in Spanish.
http://www.kumc.edu/gec/support/spanish.html
Resources and links for geneticists to share.
- Office of Rare Disorders Research, in Spanish.
http://rarediseases.info.nih.gov/Resources/Recursos_en_Espanol.aspx
- National Institute of Neurological Disorders and Stroke (NINDS).
http://espanol.ninds.nih.gov/trastornos/indice.htm
The link above drops you into the Publicaciones page at NINDS. Many of the fact sheets listed there address rare disorders and syndromes, so browse the list and see if the one of interest to you is there. Some include (but are certainly aren't limited to) disorders such as: Charcot-Marie-Tooth, Creutzfeldt-Jakob, Machado-Joseph, and Chiari malformations.
- Medline Plus in Spanish offers descriptions of many rare syndromes.
www.nlm.nih.gov/medlineplus/spanish/geneticsbirthdefects.html
At Medline, you'll find briefs on such general topics as Evaluation and Genetic Tests (Asesoramiento y Pruebas Genéticas) and a glossary of genetics terms. There are briefs on many specific syndromes, including: Charcot-Marie-Tooth, Tay-Sachs, Huntington, Wilson, Prader-Willi, Marfan, Turner, and Tourette.
- Organizations on rare syndromes/disorders outside the U.S.
The organizations above are all within the continental United States. Here are links to two organizations outside the U.S. offering information on rare syndromes or disorders in Spanish.
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Rett Syndrome
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Special Health Care Needs
- Family Voices speaks for children with special health care needs.
www.familyvoices.org/
Family Voices is a national coalition concerned with the special health care needs of children. To find information in Spanish, visit the link above. Now, scroll down the home page and look at the left for Traducciones al espanol. Clicking there will render the pages in Spanish.
- From the National Center for Cultural Competence.
http://nccc.georgetown.edu/espanol/recursos.html
Here's a list of "Recursos y enlaces para familias de niños con necesidades especiales de salud" (resources and links for families of children with special health care needs).
- Health care transitions.
http://hctransitions.ichp.ufl.edu/hct-promo/
Our children grow and mature. At some point, those with special health care needs must make the transition to advocating for themselves and moving from pediatric care to adult care. This site can help. Multiple materials are available in Spanish, including (but sure not limited to): Since You're Not A Kid Anymore, Now That You're In High School, and When You're 18. Access all at the link above. Look around!
- Do you live in New York?
http://www.health.state.ny.us/publications/0549.pdf
If you do live in NY, then you'll be thrilled to know that there's Resource Directory for New York State for children with special health care needs.
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Speech and Language Impairments
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T
Tourette Syndrome
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Traumatic brain injury (TBI)
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