NBIA "Links"
  

The following links are listed as a useful guide to find out more information on various topics. Remember--using the links on this page will cause you to leave NBIA's Web site. The sites listed here are under the control of the operating company or organization. NBIA does not endorse or guarantee the contents of these links, although every effort is made to ensure their appropriateness and suitability. These links are provided only as a service.
 

Please "click" on this link to email us if you find a link that is expired or has moved. You may suggest sites for us to add that you feel would be valuable to others through this method as well.

http://www.ninds.nih.gov The National Institute of Neurological Disorders and Stroke (NINDS)

http://www.ninds.nih.gov/health_and_medical/disorder_index.htm - an alphabetical disorder index page

http://www.ninds.nih.gov/find_people/organizations_index.htm - a listing of addresses and websites for national non-profit organizations

http://ninds.nih.gov/find_people/professional_societies.htm - a listing of professional societies with an interest in neurology or related fields

http://www.ninds.nih.gov/health_and_medical/studies.htm - links to disorder-specified clinical trials from the new http://clinicaltrials.gov web site

http://cms.hhs.gov/hipaa  The Federal health coverage protections under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) are discussed and there is a confidential, free, easy-to-use, 24-hour-a-day, Internet-based tool called HIPAA OnLine that helps answer consumer questions rapidly and accurately.

http://www.ninds.nih.gov/health_and_medical/research.htm     - pre-formatted disorder-specific searches of PubMed (Medline). These searches were created with the assistance of NIH librarians to provide access to the most recent biomedical research publications concerning human subjects. 

http://rarediseases.info.nih.gov/ord  National Institutes of Health Office of Rare Diseases

http://www.usdoj.gov/crt/ada  American with Disabilities Act Home Page

http://clinicaltrials.gov - NIH clinical trials. Features information on more than 4,000 federal and private medical studies involving patients and others at more than 47,000 locations nationwide.

http://www.nlm.nih.gov/medlineplus/ - National Library of Medicine sponsors Medlineplus, a popular health information site.
 

http://www.hopes-hope.org - Hope's Hope, a North Carolina based non-profit that provides supportive services and financial assistance to families who have children battling rare neurodegenerative disorders.

http://www.care4dystonia.org  - Information for those suffering from dystonia is available at this web site.

http://www.wemove.org  - comprehensive resource for movement disorder information

http://www.promoteawareness.org - founded by Michael Cohn, this web site's mission is to educate and promote disability awareness in their own communities and the world

http://www.rarediseases.org - National Organization for Rare Disorders, Inc.

http://www.geneticalliance.org - Genetic Alliance (formerly Alliance of Genetic Support Groups)

http://www.irondisorders.org - Iron Disorders Association

http://www.netnet.net/mums/ - MUMS National parent-to-parent organization for children with any disability, disorder, or health condition.

http://www.modimes.org - March of Dimes

http://www.hoffnungsbaum.de  -  Support organization for NBIA families in Germany

http://www.hss-nbia-shg.de -  Support organization for NBIA families in Germany
 

http://www.ataccess.org  Alliance for Technology Access - this is a network of community bases resource center, vendors, and developers providing information and support services to children and adults with disabilities.

http://www.closingthegap.com  Closing the Gap - this organization promotes computer technology for people who have special needs.

http://www.austin.ibm.com/sns/  IBM Special Needs Systems - this site offers information, files, and utilities available for downloading
 

http://www.themedicineprogram.com/ - program to provide free medicines to those in need.

http://www.resna.org/taproject   RESNA Technical Assistance Project - contact regarding nationally funded state assistive technology programs.

http://www.abledata.com - Assistive Technology products
 

http://www.ableplay.org - This Web site provides ratings and comprehensive product reviews of off-the-shelf toys for children with special needs.

http://www.eparent.com - Exceptional Parent Magazine. This magazine focuses on parenting your child or young adult with a disability or special needs.

http://www.specialchild.com  Special Child Magazine. An online magazine for parents and caregivers of children with special needs, funded by a non-profit Foundation.

http://www.specialneeds.com Special Needs Project has good books about disabilities, with links to resources.

http://www.kidsource.com/NICHCY/literature.html  Kidsource. Healthcare and education information which includes a bibliography to assist parents and professionals identify books that are written about or include characters that have a disability.

http://fathersnetwork.org/ National Fathers Network for fathers of children with special needs

http://www.nichcy.org  National Information Center for Children and Youth with Disabilities - funded by the Department of Education, a national information and referral center.

http://mchneighborhood.ichp.edu Obtaining quality managed care for children with disabilities or chronic illnesses: a resource and research guide

http://www.childrenssoftware.com  Children's Software - this site offers links to reviews of children's software, for parents and professionals.
 
http://www.osteopathic-ctr-4child.org/ - Osteopathic Center for Children

http://www.wrightslaw.com  - Special Education law

http://www.familyvoices.org - a national grassroots network of families and friends speaking on behalf of children with special health care needs
 

http://www.childrenswish.org  Children's Wish Foundation International - helps seriously ill children fulfill a special wish

http://www.wish.org  Make-A-Wish Foundation of America grants wishes to children (2 1/2 - 18 years) who have life threatening conditions

http://starlight-newyork.org Starlight Children's Foundation (NY, NJ, CT) Programs include wish granting, hospital entertainment, and outpatient activities to seriously ill children (4 - 18 years).
 

http://protectionandadvocacy.com/  National Association of Protection and Advocacy Systems - national umbrella for information, referral and advocacy.

 
http://www.pacer.org - site offers articles on disability-related issues from its newsletters; legislative pages allowing you to e-mail our representatives with a click of a mouse, a PACER calendar of new events and workshops; and detailed information for families and professionals about all PACER Center projects.

http://www.fape.org Families and Advocates Partnership for Education - this site offers information about the Individuals with Disability Education Act of 1997 (IDEA '97) with significant case decisions, promising practices, juvenile justice issues, topics related to IDEA '97, technical assistance experts, a conference calendar, self-advocate information, material on cultural diversity issues, translated materials, and a weekly news line of hot topics.