This area provides a comprehensive list of sites that we
feel are of interest to the TelAbility community. Use the
search interface above to search by keyword or category for
sites related to your area of interest. We are constantly
reviewing and adding new links so please check back often.
Know a good link, don't see it here? Recommend it!
|A Child's Guide to Epilepsy|
From Epilepsy Canada, an international non-profit organization devoted to promote and support research into all aspects of epilepsy, and to create awareness and understanding about epilepsy through educational programs.
This website, geared towards children, teaches about why and how seizures happen, how seizure medicines work,
and seizure "first aid".
On the top of the web page, go to Kidz Korner and click on "a child's guide to epilepsy"
A national support group for arthrogryposis multiplex congenita.
This website includes general information about the condition (also in Spanish), directory listings of clinics, providers, and support groups.
ABLEDATA is a federally funded project whose primary mission is to provide information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States. Choose the low graphics version of the website to get a faster download or to better accomodate users with visual and hearing impairments.
|About Face International|
AboutFace is an international organization which provides information and emotional support to individuals with facial disfigurement, and to their families.
|About Face USA|
A national non-profit organization dedicated to providing information, emotional support, and educational programs to individuals who have a facial disfigurement, and to their families.
Conditions include cleft lip and/or cleft palate, crouzon syndrome, apert syndrome, moebius syndrome and others.
|Aicardi Syndrome Website|
Aicardi syndrome is a rare genetic disorder. The site provides information for parents, a newsletter, regional coordinators, email Support Groups, chat room, foundation information, events/conference updates, and a personal section to meet some of the girls afflicted with this disorder.
|Alexander Graham Bell Association for the Deaf and Hard of Hearing|
An international membership organization comprised of parents of children who are deaf and hard of hearing, adults with hearing loss, and professionals who serve children with hearing loss.
This website offers information about the organization and its events, publications, periodicals, resources, and information about captioned movie loan programs.
A national organization dedicated to improving the lives of families who have a child with life-threatening food allergy.
This website describes the organization, offers information about all types of food allergies, offers referrals to support groups and allergists, promotes a children's book about peanut allergy, and more.
|Alliance for Technology Access|
The Alliance for Technology Access (ATA) is a network of community-based Resource Centers, Developers, Vendors and Associates dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies.
|Alpha-1 Association Mission|
Alpha-1-antitrypsin deficiency is a common hereditary disorder characterized by a reduction of serum levels of Alpha-1, emphysema, and occasionally liver disease.
The alpha 1 association provides education, information, advocacy, and supports research.This site features research, links, information, and realted events.
|American Academy of Child and Adolescent Psychiatry|
This site is designed to serve both AACAP Members, and Parents and Families. Information is provided as a public service to aid in the understanding and treatment of the developmental, behavioral, and mental disorders. You will find information on child and adolescent psychiatry, fact sheets for parents and caregivers, AACAP membership, current research, practice guidelines, managed care information, awards and fellowship descriptions, meeting information, and much more.
|American Association for Pediatric Opthamology and Strabismus|
This is the Home Page for the American Association for Pediatric Ophthalmology and Strabismus. This is designed to be a resource for Pediatric Ophthalmologists, Strabismologists, related personnel and our patients. The system is separated into divisions for various users. All are welcome to browse this site with over 90% open to all users.
|American Cancer Society|
A national organization providing support and education about adult and pediatric cancer.
This site contains information about different types of cancer and their treatments, helps you find a pediatric cancer center near you, provides information about clinical trials and more.
|American Cleft Palate-Craniofacial Association/Cleft Palate Foundation|
This informative website is home to both the American Cleft Palate-Craniofacial Association (ACPA) and the Cleft Palate Foundation (CPF). ACPA is an international non-profit association of professionals who are involved in the treatment and/or research of cleft lip, cleft palate, and other craniofacial anomalies. Also a non-profit organization, CPF provides information to the parents of newborns with clefts or other craniofacial birth defects. Be sure to look for the free on-line publications available on this site.
|American Diabetes Association|
A national nonprofit health organization providing diabetes research, information and advocacy. The mission of the organization is to prevent and cure diabetes and to improve the lives of all people affected by diabetes.
This website offers information about diabetes, links, an events calendar, research updates, and much more.
|American Foundation for the Blind|
The American Foundation for the Blind is addressing the most critical issues facing the growing population of people who are blind or visually impaired: independent living, literacy, employment, and technology. Every seven minutes, someone in America will become blind or visually impaired. Since 1921, the American Foundation for the Blind—to which Helen Keller devoted more than 40 years of her life —has been eliminating barriers that prevent people who are blind or visually impaired from reaching their potential. The American Foundation for the Blind is dedicated to addressing the critical issues of literacy, independent living, employment, and access through technology for the ten million Americans who are blind or visually impaired.
|American Latex Allergy Association|
A.L.E.R.T. , Inc. is a national non-profit, tax exempt organization that has designed their website to help connect you with educational materials, support groups, publications and product information to assist you with your understanding of natural rubber latex allergy.
|American Society for Deaf Children|
A nonprofit organization, the American Society for Deaf Children (ASDC) provides support, encouragement, and information to families raising children who are deaf or hard of hearing. The ASDC website includes legislative information, convention dates and descriptions, membership information, current news, and related links.
|Arthritis in Children, Teens and Young Adults|
From the American Arthritis Foundation.
This section of their website includes information about arthritis or rheumatic disease in children and young adults.
Includes information about the American Juvenile Arthritis Organization (AJAO) and many resources and supports available nationwide.
|Asociación de la Distrofia Muscular (Muscular Distrophy Association)|
(English description follows below.)
Aquí encontrará información completa acerca de las enfermedades neuromusculares incluidas en el programa de la Asociación de la Distrofia Muscular, incluso publicaciones, las notícias más recientes sobre la investigación, programas de tratamiento, salas de charla, información para niños y más - todo en español. (Aunque no todo la información de este sitio se ofrece en español, todavía es un buen recurso para los hablahispantes.)
This is a Spanish language site with information about Muscular Distrophy and neuromuscular related diseased from the Muscular Distrophy Association. It includes publications, recent research studies, information on treatment programs, chat rooms and information for children. Not all of the information on the site is in Spanish but it is still a valuable resource for Spanish Speakers.
|Asthma and Allergy Foundation of America|
Home of the Asthma and Allergy Foundation of America. This site provides educational materials, news articles, an ask the allergist section, and more.
A website that offers literacy aids, picture schedules, visual aid displays and choice boards, and communication books to aid teacher in establishing a successful and intergrated classroom.
|Autism Society of America|
ASA is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The Society and its chapters share a common mission of providing information and education, supporting research and advocating for programs and services for the autism population. This website includes an overview of the not-for-profit organization,links to local chapters (3 NC links), publications, and policy statements.
A national, non-profit organization of parents, clinicians and scientists dedicated to finding effective treatments, prevention, and a cure for autism and related disorders.
This website offers information about the orgnanization, its fundraising activities, its sponsored research and more.
|Beach Center on Families and Disabilities|
The Beach Center, located at the University of Kansas, is funded through a grant from the US Department of Education. This website contains research briefs, Beach Center Newsletters, fact sheets on behavioral management, products, and links to support organizations. Good general information about behavior management, autism, fathers of children with special needs, and sleep problems. Technical note - the graphics can take a while to download.
|Beckwith-Wiedemann Support Network|
The BWSN is a non-profit organization created for parents, professionals, and others interested in the Beckwith-Wiedemann Syndrome.
The major goals of the BWSN are (1) to provide information and peer support to the individuals and families affected by BWS, (2) to increase both public and professional awareness of BWS, and (3) to encourage research aimed at the cause, early detection (including prenatal), and treatment of BWS.
This website provides information about the condition, and links to other websites of interest including a parents' forum.
|Brain Injury Association of America|
Home page of the Brain Injury Association of America.
This site includes good general information about brain injury, national and statewide resource directories, news and updates, and advocacy information.
|Breastfeeding a Baby with Down Syndrome|
Benefits of and tips that may help breastfeeding your baby with Down Syndrome
|CF Awareness Foundation|
Based in New Jersey, this non-profit organization seeks to increase public awareness about cystic fibrosis.
This website offers an overview of the organization and its events and sponsors and porvides links to several other websites about CF.
A National non-profit organization representing people with AD/HD (attentin deficit/hyperactivity disorder) that works to improve their lives through education, advocacy, and support. The website contains fact sheets, news releases, local chapter contact numbers (there are 11 in NC), research/ clinical trials information, advocacy tips for special education, and related links.
A national listserv mailing list for discussions of issues related to the parenting of children with cerebral palsy.
This website has information about the listserv, a link to subscribe to receive messages, an archive of previous messages, and links to other resources.
|Candlelighters Childhood Cancer Foundation|
A national organization that provides support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them.
|Childhood Apraxia of Speech Association of North America (CASANA) |
Information about apraxia and dyspraxia of speech in children, from the not for profit Childhood Apraxia of Speech Association of North America. The most comprehensive site on this topic currently available.
This website provides information about the organization, an extensive resource directory, links to community support groups and other related sites, a public message board, how to find a speech-language therapist, a monthly newsletter, calendar of events, and much more.
|Children's Hemiplegia and Stroke Association|
A non-profit family focused organization which offers support and information for families of children who have hemiplegia, hemiparesis, or childhood, infant, or in utero stroke.
This website includes information about the organization, medical and therapy information, a newsletter, chatroom , links, and more.
Cleft Advocate supports, educates and inspries families affected by cleft lip/palate and other craniofacial anomalies.
|Consumer Products Safety Commission|
Consumer Products Safety Commission, an independent Federal regulatory agency, helps keep American families safe by reducing the risk of injury or death from consumer products. Visit us often to share lifesaving information. Go to "Report unsafe products" to send us information on-line.
This site offers support to families dealing with crainiosynostosis, it is the web home of a support organization for anyone who has had a craniofacial disorder affect their life
|Cystic Fibrosis Foundation|
This non-profit organization encourages the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. Founded in 1955, the CFF works closely with medical professionals, reserchers, the government, people with CF, and families. This website includes an on-line pharmacy, fact sheets, additional resources, locations of CF centers across the country, and information on clinical trials. The CFF also offers free brochures and videos that can be ordered online.
|Dyslexia Research Institute|
The goal of the Dyslexia Research Institute, Inc. is to change the perception of learning differences, specifically in the area of dyslexia and attention deficit disorders (ADD).The Dyslexia Research Institute operates Woodland Hall Academy and Dyslexia Research Institute Literacy and Life Skills (DRILLS), an adult program, provides parenting information, teacher training, advocacy and consultation, and research and development resources.
The Link contains parenting resources and informative materials.
|Ehlers-Danlos National Foundation|
Based in Los Angeles, California, this national non-profit organization provides support and information to those with Ehlers-Danlos Syndrome through a quarterly newsletter, support groups, and published articles listed on the website. The website also has links to similar disorders and features a kid's corner to provide information to children in an easy to read manner.
A national, charitable organization dedicated to work for children and adults affected by seizures through research, education, advocacy and service.
This website contains information about the organization, conferences, answers to common questions about seizures (including a section in Spanish), news, chat rooms, research information, and much more.
|Families of Spinal Muscular Atrophy|
This non-profit organization of families of children with spinal muscular atrophy (SMA) focuses on supporting each other and raising funds for research designed to find a cure for this condition. This website has information about SMA, lists local chapters (including the NC chapter headquartered in Cary), provides updates on research activities, has a section of SMA-related links, and lists pen-pals for children with SMA.
|Family Center on Technology and Disability|
This program is designed to assist organizations and programs who serve families of children with disabilities by providing information and support on accessing and using assistive technology.
It is run through the United Cerebral Palsy Associations and their project partners, Alliance for Technology Access (ATA), the Parent Advocacy Center on Education (PACER), Academy for Educational Development (AED), and InfoUse.
This link will take you to their front page where you can choose between their text-only or graphical websites.
A wonderful program for anyone with a disability, this website integrates information, resources, and communication opportunities on the internet for persons with disabilities, for their families, and for those that provide them services and support. Includes informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature.
Family Voices, a non-profit organization, acts as a national clearinghouse for information to improve the health care of children with special needs. This website includes information on policy issues, publications, state resources, and related links. Be sure to explore the "Advocate's Corner" when browsing this site and look into their information on ways to improve the transition to adulthood for children with special needs.
|Family Voices-North Carolina|
Many groups focus on particular childhood illnesses or populations. Others represent children and adults, or concentrate on specific reform proposals. Until Family Voices was formed, there was no national organization that spoke for all children with special health needs.
Family Voices believes that children with special health needs face common problems caused by fundamental inadequacies in our health care system. Family Voices does not support any specific health care reform plan. Instead, the role of Family Voices is to advocate for the inclusion of a set of basic principles in every health care reform proposal.
|Federation for Children with Special Needs|
Based in Massachusetts, The Federation provides technical assistance,information, and support services to help families of children with special needs. There is a focus on special education and this site is a great resource for advocacy tips, IEP's and general information about IDEA (the Individuals with Disability Education Act). The site also has a text-only version available through the homepage.
|Federation of Families for Children's Mental Health|
A National parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families.
This website provides a description of the organization, a listing of affiliates (there are at least two in NC), and links to relevant sites.
Focus Families helps parents and caregivers with children who have Optic Nerve Hypoplasia (O.N.H.) and Septo-Optic Dysplasia, (S.O.D.), also known as deMorsier syndrome.
The website provides information about the organization, an online glossary of terms, a calendar of events, parent support resources, and more.
|General Information About Disabilities|
This web page contains a handout from the National Information Center for Children and Youth with Disabilities (NICHCY), which gives an overview and definitions of different categories of disabilities. It also describes what qualifies a child for services through IDEA (the Individual with Disabilities Education Act).
|Genetic Alliance, Inc.|
The Genetic Alliance is an international coalition representing more than 300 consumer and health professional organizations with millions of members--all working together to promote healthy lives for everyone impacted by genetics. The Alliance supports individuals with genetic conditions and their families, educates the public and advocates for consumer-informed public policies.
|Healthy and Ready to Work|
This is the website for a federally supported program that promotes a comprehensive system of family centered, culturally competent, community-based care for children with special health care needs may need assistance in making the transition from pediatric to adulty health care and to post-secondary education and/or employment.
It provides information about the program, a calendar, related links and other materials.
A nonprofit organization, the Hydrocephalus Association seeks to provide support, education, and advocacy for individuals, families, and professionals caring for people with hydrocephalus.This website provides in depth information on hydrocephalus,a national directory of people with hydrocephalus and Hydrocephalus Support Groups, a newsletter, scholarship information, and much more.
|Immunization Action Coalition|
A nonprofit organization based in St. Paul, Minnesota and supported in part by the Centers for Disease Control (CDC), the Immunization Action Coalition seeks to boost immunization rates and prevent disease through increased community awareness of, and responsibility for, the appropriate immunization of children and adults against all vaccine-preventable diseases. This site includes print materials, updates on immunizations, links to related sites, membership information, and quizzes to test your immunization/vaccination knowledge. Some materials are available in Spanish.
|Institute for Child Health Policy|
The Institute for Child Health Policy is a state-wide Institution of Florida's State University System, headquartered at the University of Florida with affiliates at other state institutions across Florida.
The Institute focuses its attention on issues related to children in managed care with an emphasis on children with special health care needs. Access, utilization, cost, quality and family involvement are this program's principal areas of interest.
This excellent website contains information about the program, policy statements and other products, presentations from other programs funded through the federal Maternal and Child Health Bureau, and a large arrray of useful links. Be sure to look through their set of resources available to help young adults with disabilities transition to work and adulthood.
An international family oriented organization that provides information and support for adults and children with diabetes and their families interested in insulin pump therapy.
You'll find chat rooms, links, and even a special section devoted to children with diabetes and the stories about how an insulin pump has changed their lives.
|International Child Amputee Network|
I-CAN (International Child Amputee Network)provides information and support contacts to families of children with absent or underdeveloped limbs.
Kids As Self-Advocates (KASA) is a national, grassroots network of youth with special needs and their friends who work to spread helpful, positive information among their peers to increase knowledge about living with special health care needs, health care transition issues, education, employment, and other topics.
A program of Family Voices, a national non-profit organization of families and friends speaking on behalf of children with special health care needs.
The website of The Learning Project, sponsored by PBS station WETA in Washingtom,DC. This exceptional website is a wonderful source of information about learning disabilities and resources available to optimize students' learning experiences. You can participate in special education bulletin board discussions and online chat rooms, shop their LD resource store, or subscribe to their newsletter. Also available in spanish.
|La Leche League International|
A resource to help families continue breastfeeding their children. Can search the site for "special situtations" and "disabilities" for more information, including materials in Spanish.
|Learning Disabilities Association|
A national, nonprofit organization, the Learning Diabilities Association (LDA) works to advance the education and general welfare of children and adults who have learning disabilities. LDA seeks to accomplish its mission through advocacy, education, research, service, and collaborative efforts. This website includes general facts and information about learning disabilities, resources, membership information, and a bookstore. Also be sure to check out the link to our state's LDA page.
The National Lekotek Center aims to contribute to the knowledge base about the link between play and early learning for children with special needs. This website provides information and resources for parents and professionals, including a listing of play and toy ideas developed for different conditions.
|MUMS - Mothers United for Mutual Support|
MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS aims to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Their database includes over 15,700 families from 48 countries, covering over 2700 disorders, very rare syndromes or undiagnosed conditions. Their newsletter allow families to share and speak out about issues affecting their lives. This website describes the origins and goals of this organization, provides information about various conditions, and includes a directory of hyperbaric oxygen therapy (HBOT) providers.
|Maple Syrup Urine Disease Family Support Group|
The MSUD Family Support Group is a nonprofit organization of parents of children with MSUD, adults with MSUD, health-care professionals and others interested in MSUD.
This website contains information about the organization, information about MSUD, a list of contacts and much more
|Mosaic Down Syndrome on the Web|
Run by Linda Beets, the mother of a daughter with mosaic down syndrome, this website offers information and support to families of children with this type of down syndrome.
|NBIA Disorders Association|
A national non-profit organization based in El Cajon, California that offers families, physicians, and support providers information about an inherited disease called Neurodegeneration with Brain Iron Accumulation (NBIA).
This website contains information about the organization, an FAQ section, a link to their Listserv, upcoming events, research updates, and more.
|National Alliance for Autism Research|
Based in Princeton, New Jersey, this national, non-profit organization is dedicated to find the causes, prevention, treatment and, ultimately, cure of the autism spectrum disorders.
This website offers information about the organization, and updates on research findings (and funding).
|National Association for Down Syndrome|
Based in Chicago, Illinois, this non-profit organization provides support for families of people with Down Syndrome through conferences and family networking.
This website describes the organization, offers a bimonthly newsletter, provides many links to other related websites and offers contact numbers for people living inside and outside the Chicago area.
Note: Their products section includes posters and videos (including an exercise video for people with Down Syndrome).
|National Association for Family Child Care|
The National Association for Family Child Care is a non-profit organization dedicated to promoting quality child care by strengthening the profession of family child care.
The goals of the Association are: to strengthen state and local associations as the primary support system for individual family child care providers; to promote a professional accreditation program which recognizes and encourages quality care for children; to represent family child care providers by advocating for their needs and collaborating with other organizations; to promote the diversity of the family child care profession through training, state and local associations, public education, and Board membership; and to deliver effective programs through strong organizational management.
|National Association of Developmental Disabilities Councils|
NADDC is the national organization of Developmental Disabilities Councils that advocate and work for change on behalf of people with developmental and other disabilities and their families. NADDC promotes national policy to enhance the quality of life for all people with developmental disabilities. NADDC works with Congress and others in the reauthorization of the Developmental Disabilities Act, to strengthen Councils' systems change and advocacy role.
|National Association of the Deaf|
Founded in 1880, the National Association of the Deaf (NAD) is the oldest and largest organization representing people with disabilities in the United States.
Programs and activities include grassroots advocacy and empowerment for people with hearing impairment, captioned media, certification of American Sign Language professionals; certification of sign language interpreters; deafness-related information and publications,legal assistance, policy development and research, public awareness, and youth leadership development.
|National Ataxia Foundation|
A national organization dedicated to improving the lives of persons affected by ataxia through support, education, and research.
This website offers information about the organization, FAQs about ataxia, research opportunities, educational conferences and more.
|National Campaign for Hearing Health|
This national program, sponsored by the Deafness Research Foundation, advocates for improved detection, prevention, intervention, and research into hearing impairment. This site provides great resources for parents of children with hearing loss as well as helpful information on how to become an advocate for the cause of hearing health.
|National Center for Learning Disabilities|
Based in New York, this organization seeks to provide information, support, and advocacy to help improve the achievement of people with learning disabilities.
This site includes a description of the organization, research news, IDEA updates, information about special education, and a resource locator for school programs throughout the country.
|National Center on Physical Activity and Disability|
Located in the Department of Disability and Human Development at the University of Illinois at Chicago, this national organization encourages and supports people with disabilities who want to participate in some form of regular physical activity.
The website includes information about the organization and lots of reports, resources, links, and discussion groups focused on sports and exercise for people with disability.
|National Deaf Education Network and Clearinghouse/Info To Go|
Info to Go, formerly the National Information Center on Deafness, is a centralized source of accurate, up-to-date, objective information on topics dealing with deafness and hearing loss in the age group of 0-21. Info to Go responds to a wide range of questions received from the general public, deaf and hard of hearing people, their families, and professionals who work with them. Info to Go collects, develops, and disseminates information on deafness, hearing loss, and services and programs related to children with hearing loss from birth to age 21.
|National Down Syndrome Congress|
This national non-profit organization aims to be the national voice for state and local groups, individual members, persons with Down syndrome, and all other interested persons. It serves as a clearinghouse on Down syndrome by collecting, creating, and disseminating information via the functions of the National Down Syndrome Congress Center, the annual convention, and the Down Syndrome News.
|National Down Syndrome Society|
A national not-for-profit organization that increases public awareness about Down syndrome and seeks to discover its underlying causes through research, education and advocacy.
This website provides information about the organization, its conferences, and programs and offers information resources, advocacy news, research opportunities, a bookstore, website links and more.
|National Fatherhood Initiative|
The National Fatherhood Initiative seeks to improve the lives of children by helping men to become better fathers. A non-profit organization, NFI enables fathers by distributing information, conducting public awareness campaigns, organizing community fatherhood forums, providing resource material, and publishing a quarterly newsletter. This website includes access to numerous on-line resources, advice on fatherhood, an on-line discussion forum for fathers, membership information, and links to related sites.
|National Fragile X Foundation|
Based in San Francisco, California, this non-profit organization informs and educates family members and caregivers about those with Fragile X Syndrome.
The website offers an overview of the characteristics and interventions used for people with Fragile X Syndrome, provides information about the organization, provides relevent links and even has a short video about fragile x that can be viewed from the site.
|National Head Start Association|
The National Head Start Association (NHSA) is a private not-for profit membership organizaion that provides a national forum for the continued enhancement of Head Start services for poor children
ages 0 through 5, and their families.
|National Information Center for Children and Youth with Disabilities|
Now called the National Dissemination Center for Children with Disabilities. Provides information on disabilities and disability-related issues for families, educators, and other professionals. An excellent site for policy issues, IDEA / special education, pertinent nationwide conferences and resource organizations at both the state and federal levels. Text-only version available.
|National Marfan Foundation|
Founded by people who have Marfan Syndrome and their families, the National Marfan Foundation gathers and distributes information to families, patients, members, and the health care community, provides a network of support, and helps to fund and encourage research on this condition. Upcoming events, news, a detailed description of Marfan Syndrome, and publications can all be found on this website.
|National Organization for Rare Disorders|
A federation of health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Be sure to look at NORD's Medication Assistance Program, and databases on rare diseases, genetic syndromes, "orphan" drugs, and specialty organizations.
|National Organization on Mental Retardation|
Educational information, policy statements helpful to families and professionals caring for individuals with mental retardation.
|National Parent Network on Disabilities|
National advocacy organization for families of children, youth, and adults with disabilities. Contains updates of federal legislation affecting the special needs community amd many disability-related links. A good resource for issues related to IDEA / special education, and the ADA.
You can use this site to sign up for their weekly update- "The Friday Fax".
|National Spinal Cord Injury Association|
A nonprofit organization, The National Spinal Cord Injury Association (NSCIA) works to empower individuals and families with spinal cord injury through education and support.
Information for the newly injured, pen pal directories for kids, general fact sheets, special project information, membership options, and links to a wealth of resources are all included on this website.
|National Stuttering Association|
The National Stuttering Association (NSA) advocates in the community for those who stutter by attempting to raise public awareness through education and outreach activities. This website includes membership information, access to a bookstore,news, and links to related resources about speech impediments.
|Osteogenesis Imperfecta Foundation|
The website of this national non-profit organization offers a great wealth of information and support for caregivers, parents, providers, and researchers.
Run by and for an international "family" of over 800 parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. Covers multiple conditions including developmental delay, sensory integration problems, cerebral palsy,rare genetic disorders, and others. Professionals, organizations and therapists also monitor and contribute.
Pediatric/Adolescent GastroEsophageal Reflux Association (PAGER)is a national, non-profit organization run by several parents of children with GER. It provides information and support to people about Gastroesophageal Reflux (GER)and how it can affect your child's health and feeding ability.
The website contains information about the organization and its events, research updates and stories from experienced parents of children with GER. The discussion section is a popular destination.
|Parent Advocacy Coalition for Educational Rights|
Located at the University of Minnesota, PACER's mission is to improve and expand opportunities that enhance the quality of life for children and young adults with all disabilities (physical, mental, emotional, learning) and their families. PACER now offers 20 major programs, including Parent Training programs, programs for students and schools, and technical assistance to regional and national parent centers.
The website includes resources and publications on advocacy, special education, transition to adulthood, and emotional and behavioral disorders.
An information, referral, and advocacy service for parents and caregivers of children with disabilities and professionals who work with families in Pennsylvania. Provides listing of conferences, bibliographies and reading lists, and disability specific links.
|Pathways Awareness Foundation|
Pathways Awareness Foundation is a national non-profit organization whose mission is to raise awareness about the benefits of early intervention for infants and children with physical movement and/or sensory processing differences. Their website supports professionals and families who have concerns about their children’s physical development.
It offers specific information about pediatric physical development for both professionals and parents, and features a unique growth and development chart approved by the Illinois Chapter of the Academy of Pediatrics. One can use the chart to track a child’s physical, play, and speech milestones from 3-15 months. The chart also explains what parents need to know about normal development during this age period, gives an overview of developmental milestones, and includes pictures, as well as warning signs for potential movement and developmental problems. It is a great tool for physicians and parents to use and share.
You can also view the entire Pathways Awareness Foundation video (in both English and Spanish), by clicking on the “Affiliates” button on the left side of our home page. Then click on the link below the heading “Early Infant Assessment Redefined”.
If you would like more information about the Pathways Awareness Foundation or services available in your area, please call toll free 1-800-955-CHILD or write to Pathways Awareness Foundation, 150 N. Michigan Ave., Suite 2100, Chicago, Illinois 60601
|Patient Travel (National Patient Air Transport Helpline)|
This non-profit organization helps patients find appropriate charitable medical air transportation resources in the United States. It also operates various Special-Lift and Child-Lift programs on behalf of special disease organizations and/or clinical
research centers in the United States. Their goal is "..to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation." The website describes the programs they offer and has their toll-free phone number parents and professionals can call to look into air travel options.
|Prevent Blindness America|
A national organization dedicated to reducing blindness and visual impairment by screening all young children for vision problems.
STOMP (Specialized Training of Military Parents) is an organization based in Tacoma, Washington, established to help military families who have children with special needs.
The website contains newsletters, chat rooms, schedules of local workshops, and a discussion board to provide a means to share experiences and recommendations for families in the Department of Defense's armed forces.
|Sensory Integration Network|
A website designed to help improve the quality of life for children, adolescents and adults with sensory integration dysfunction (DSI).
This website includes:
Definitions and descriptions of patterns of dysfunction; Information about neurological, physiological and bio-chemical mechanisms that are affected in the process of normal and atypical sensory integration; Research studies; Funding opportunities;
Therapy equipment and treatment suggestions; Books, articles, video-tapes and other resources; Questions and answers about Sensory Integration Dysfunction; Links to related sites.
|Sickle Cell Kids|
This is a great web site developed especially for kids. It's goal is to help kids with sickle cell disease learn what to do to stay healthy. It is full of interactive and fun educational activities.
|Spastic Paraplegia Foundation|
A national not for profit organization dedicated to support people with Hereditary Spastic Paraplegia and Primary Lateral Sclerosis.
This website contains information about the organization, HSP and PLS, research updates, patient forums and more.
|Special Education - Definitive Collection of Net Links|
Index of Net resources about special education, organized by category and compiled by About.com 'expert guide' Pat Linkhorn.
|Special Education Resources on the Internet|
A collection of links designed to make on-line Special Education resources more easily and readily available. Site is modified and updated on a regular basis and includes links related to autism, hearing impairment, visual impairment, inclusion, and other topics.
A national online resource for families, educators, and medical professionals, offering information about language development, and helping those who care for children with apraxia, stuttering, pervasive developmental disorder, dysarthria, and aphasia.
At this site, you can learn about different conditions, read articles, participate in online discussion groups, subscribe to listservs and more.
|Spina Bifida Association of America|
The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected. The Association was founded in 1973 to address the specific needs of the spina bifida community and serves as the national representative of over 70 chapters. SBAA's efforts benefit thousands of infants, children, adults, parents and professionals each year. The website includes information about many of their services, including a toll free 800 Information and Referral Service, a Bi-monthly Newsletter,Legislative Updates, Publications, Agent Orange Class Assistance Program, Professional Advisory Council, Nursing Council, Conferences and Educational Symposiums, Adult Network, Scholarship Funds, Public Awareness Campaign, Chapter and Member Services, National Public Service Announcements,Individual and Systems Advocacy and the SBAA Research Fund.
|Stuttering Foundation of America|
Based in Memphis, Tennessee, the Stuttering Foundation of America, the first nonprofit, charitable association in the world to concern itself with the prevention and improved treatment of stuttering, distributes over a million publications to the public and professionals each year.
This web site has information for those who stutter and their families as well as professionals.
TWIN HOPE, INC.is dedicated to the service of families, to the education of the public and professionals, and to broaden the awareness of
Twin-to-Twin Transfusion Syndrome (TTTS) and other twin related diseases.
The site provides information about support, fundraisers, a newsletter, treatment centers and research.
|The American Federation for the Blind|
The American Foundation for the Blind (AFB) is a leading national resource for people who are blind or visually impaired, the organizations that serve them, and the general public. The mission of the American Foundation for the Blind is to enable people who are blind or visually impaired to achieve equality of access and opportunity that will ensure freedom of choice in their lives.
|The Fathers Network|
This website celebrates and supports fathers and families raising children with special health care needs and developmental disabilities.
It contains news and resources, articles by dads, links, bulletin boards, and a photo album.
Has materials in Spanish as well.
Funded by the Office of Children with Special Health Care Needs, Washington State Department of Health.
|The Flutie Foundation|
The Doug Flutie, Jr. Foundation provides funding for services for financially disadvantaged families who need assistance in caring for their autistic children, funds research and education into the causes and consequences of childhood autism, and serves as a clearinghouse and communications
center for new and innovative programs and services developed for autistic children.
|The Food Allergy and Anaphylaxis Network|
The Food Allergy & Anaphylaxis Network (FAAN) is a non-profit organization that is committed to increasing public awareness of food allergies and anaphylaxis, providing education, and advancing research on behalf of all those affected by food allergies. This site contains information tailored for individuals living with food allergies (symptoms, testing, treatment, and recipes), as well as resources for larger groups (school programs, current research, allergy alerts and educational topics).
|The Genetic Alliance|
An international coalition based in Washington, DC that supports individuals with genetic conditions and their families, educates the public and advocates for consumer-informed public policies.
This website provides information about the organization, a calendar of events,
a useful online directory of genetic resources, including support groups for a wide variety of conditions, and much more.
|The Magic Foundation|
MAGIC is a national non-profit 501(c)(3) organization providing support and education regarding growth disorders in children and related adult disorders, including adult GHD.
This website has been updated for 2000 to include their quarterly newsletter, and a place to register for their listserv.
|The Sarah Jane Brain Project|
Begun by the father of a girl who sustained a brain injury, this national organization is working to create a model system for children suffering from all Pediatric Acquired Brain Injuries.
At this website you can learn more about the organization, its events, find links to useful information and resources, follow Sarah Jane's progress in words and videos, and more.
|The Shaken Baby Alliance|
The mission of the Shaken Baby Alliance is to provide support for SBS victim families (Including adoptive and foster parents), advocate for justice for SBS victims, and increase SBS awareness.
|Tourette Syndrome Association, Inc.|
The TSA is a national not-for profit organization dedicated to providing up-to-date, accurate information about Tourette Syndrome.
This website describes the organization, provides information about Tourette Syndrome, offers books and videos for purchase, has an online newsletter (non-members can only read the first page each edition), an ask the expert page and a new education and advocacy section.
|United Mitochondrial Disease Foundation|
Based in Pittsburgh, Pennsylvania, this national non-profit organization promotes research for the cure and treatment of mitochondrial diseases and to provide support to affected families.
This website offers information about the organization, online newsletters, listservs, message boards, website links, and more, for both families and health care providers.
|United Ostomy Association, Inc.|
The United Ostomy Association is a volunteer-based health organization dedicated to providing education, information, support and advocacy for people with intestinal (ex/colostomy) or urinary (ex/vesicostomy)diversions. This website provides information about ostomies, conferences, books, local chapters, and more.
|United States Cerebral Palsy Athletic Association|
The UCPAA provides both individualized sports training and competitive opportunities for atheletes with cerebral palsy, or other related
challenges, such as traumatic brain injuries or strokes. This website includes a list of upcoming events at the national level, information about the 2000 Paralympics in Australia, and links to relevent resources.
|WIDE SMILES - Cleft Lip and Palate Resource|
One child in 700 is born with a cleft. It is the fourth most common birth defect, and the first most common facial birth defect. And yet so many parents feel so alone.
WIDE SMILES was formed to ensure that parents of cleft-affected children do not have to feel alone. We offer support, inspiration, information and networking for families everywhere who may be dealing with the challenges associated with clefting.
At WIDE SMILES we believe that, while it may not have been wonderful that our children were born with cleft, it is nonetheless true that our children who were born with cleft are wonderful. Together we share the struggle, the pain, the joy and the triumph of watching our children grow. Their challenges may be many, but we can face them together, learn from each other and help our children to recognize their beauty within.
|Williams Syndrome Association|
Williams syndrome is a rare genetic disorder. This site is geared toward caregivers and professionals providing information on common traits throughout development, regional information, web links, camps, etc.
|children with DIABETES|
The on-line community for kids, families and adults with diabetes.