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Helpful Links

The following links from other sources provide information on topics related to NBIA and rare disorders, including assistive technologies, travel with a disabled family member and more. Using the links on this page will cause you to leave the NBIA Disorders Association website. The Association 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 let us know if you find a link that has moved or is broken. You may suggest sites for us to add that you feel would be valuable to others as well at This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

Assistive Technology

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

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

 

General

http://www.makoa.org/index.htm - Disability information and resources

http://www.QoLPublishing.com - Quality of Life Publishing. Specialists in gentle grief support offering books, booklets, and interactive workshops. Quality of Life Publishing also offers a speakers bureau featuring authors and experts in grief and bereavement.

http://www.lehman.cuny.edu - 80/faculty/jfleitas/bandaides  This is a site about dealing with medical problems. There is content specifically for kids, teens, parents, siblings, teachers and health professionals.

http://www.sabaly.org - Site dedicated to Sabrina & Alyssa Barbiero. Tells their story and promotes awareness of NBIA. 

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.

http://hhccommunications.com - Hospice and Healthcare Communications mission is to educate inform, motivate and inspire quality end of life and palliative care programming, policy and advocacy projects.

http://www.ekrfoundationorg - Elisabeth Kubler-Ross Foundation

http://www.tircon.eu - TIRCON ("Treat Iron-Related Childhood-Onset Neurodegeneration") is a research consortium comprising 13 partners from 8 countries and funded by the EU under FP7. TIRCON's concept is to bring together the existing outstanding, but scattered expertise in NBIA research and care throughout Europe and on the international level.

http://www.abilities.ca - Abilities Canada and Abilities magazine

http://www.adaysworkmusiceducation.com - Designing and Building Musical Instruments and Adaptive Aids for persons who are physically challenged, developmentally disabled, manually impaired or wheelchair bound.

 

Government

http://www.ninds.nih.gov/news_and_events/proceedings/Hallervorden-Spatz.htm - The First Scientific Workshop of Hallervorden-Spatz Syndrome Conclusions/Recommendations/Participants

http://www.nlm.nih.gov/hinfo.html - National National Library of Medicine

http://www.nlm.nih.gov/medlineplus - Medline Plus, a popular health information site sponsored by the National Library of Medicine

http://www.ninds.nih.gov - Institute of Neurological Disorders and Stroke (NINDS), an alphabetical disorder index page, a listing of addresses and websites for national non-profit organizations, a listing of professional societies with an interest in neurology or related fields, links to disorder-specified clinical trials.

http://www.ncbi.nlm.nih.gov/pubmed - PubMed comprises more than 22 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites. to full-text content from PubMed Central and publisher books. Citations may include links to full-text content from PubMed Central and publisher http://rarediseases.info.nih.gov  National Institutes of Health Office of Rare Diseases Research (ORDR). ORDR is part of the NationalCenter for Advancing Translational Sciences (NCATS). The goals of ORDR are to identify, stimulate, coordinate and support research to respond to the needs of patients who have any one of the approximately 6,800 rare diseases known today.

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://ghr.nlm.nih.gov - Genetics Home Reference provides information on genetic conditions.

http://www.fda.gov - US Food and Drug Administration (FDA)

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

http://www.disabilities.gov - Federal government website for comprehensive information on disability programs and services in communities nationwide. The site links to more than 14,000 resources from federal, state and local government agencies; academic institutions; and nonprofit organizations. You can find answers to questions about everything from Social Security benefits to employment to affordable and accessible housing.

 

Non-Profit Organizations

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

http://www.geneticalliance.org - Genetic Alliance

http://cnsfoundation.org - CNS is a nonprofit research foundation improving the lives of children disabled by neurological disorders through research focused on brain repair and regeneration.

http://www.dystonia.us/ - American Dystonia Society

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

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

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.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.nbia.co.uk - Support organization for NBIA families in England

http://asso.orpha.net/DNAI/cgi-bin/DNAI/index.php?lng=fr  - Support organization for NBIA families in France

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

http://www.aisnaf.org  - Support organization for NBIA families in Italy

http://www.ijzer-sterk.info - Support organization for NBIA families in the Netherlands

http://enachasociacion.blogspot.com/p/inicio.html  - Support organization for NBIA families in Spain

www.naadvocacy.org – advocates for Neuroacanthocytosis Patients

www.dystonia.org.uk – The Dystonia Society provides support, advocacy and information for anyone affected by the neurological movement condition known as dystonia

 

Parenting

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://www.osteopathiccenter.org/ - Osteopathic Center for Children & Families

http://www.childrenssoftware.com - Children's Software - this site offers links to reviews of children's software, for parents and professionals.

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.ucando.org - Can do! Kids

http:www.SpecialEducationGuide.com - Information to help with the challenges that parents and teachers of children with special needs face such as establishing a parent-teacher partnership, collaborating on an IEP and more.

http://phdinspecialeducation.com/special-needs-parenting-handbook - A resources guide for parents of special needs children.

  

Pharmaceutical

http://www.needymeds.com/index.html - Listing of pharmaceutical manufacturers and the special programs they have to assist people who can't afford to buy the drugs they need.

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

 

Recreation

http://www.ncpad.org - National Center on Physical Activity and Disability. Contact an Information Specialist

http://www.ncaonline.org - National Center on Accessibility

http://www.dsusafw.org - DSUSAFW -- Disabled Sports USA Far West -- Adaptive Recreation

http://www.nscd.org - National Sports Center for the Disabled

http://www.morganswonderland.com ‎ - Morgan's Wonderland - The World's First Ultra Accessible Family Amusement Park

http://www.adaptiveadventure.org - Adirondack Adaptive Adventures works to enhance the lives of people with disabilities and their families through adaptive adventure recreation. TriAd creates opportunities for wilderness access and provides adaptive support for human-powered outdoor recreation while promoting inclusion, independence; and interdependence for all.

http://www.diveheart.org - Diveheart provides scuba diving opportunities for children, adults and veterans with disabilities

http://www.adaptivesports.org - The Adaptive Sports Center enhances the quality of life of people with disabilities through exceptional outdoor adventure activities.

http://www.accesstr.com - Site that has products for those with disabilities to help with adapting recreational activities.

http://www.ainsleysangels.org - Ainsley's Angels are athletic ride-along programs created for children, teens, adults and veterans with disabilities who normally would not be able to experience endurance events such as triathlons or road races. It is a volunteer-based service that provides jogger chairs, bike trailers and rafts for anyone who is disabled (Known as Captains) and runners (Known as Angels) to push them in endurance events.

http://phdinspecialeducation.com/groups-activities - A list of 101 sites dedicated to special needs activities such as camps, music, dance, sports, special needs vacations, and other useful information.

 

Travel

http://www.PatientTravel.org - National Patient Travel Helpline - this organization provides information about all forms of charitable, long-distance medical air transportation and provides referral to all appropriate sources of help available through the Angel Flight America Network.

http://www.nps.gov - National Park Service

http://www.access-able.com - Access information and resources for traveling with disabilities.

http://www.flyingwellstravel.com - Flying Wheels Travel provides people with physical disabilities, chronic illness or difficulty walking the opportunity to extend their lifestyle with unique travel and recreation destinations while empowering individuals and their family members to explore the world.

http://www.accessanything.com - Access Anything is an online travel resource for people with disabilities.

http://www.abletotravel.org - Tours have been developed especially for travelers with disabilities. All routes and lodgings have been selected to offer the traveler the maximum in accessibility.

http://www.miusa.org/ncde/tipsheets/airlinetips - Air Travel Tips for People with Disabilites - Mobility International USA.

http://www.independenttraveler.com/travel-tips/senior-travel/disabled-travel - Independent Traveler – Disabled Travel.

http://www.capella.edu/interactivemedia/Commencement/docs/TravelingDisability.pdf - Traveling with a Disability or Medical Condition.

http://www.tripbuzz.com/wheelchair-accessible-travel-guide - Wheelchair Accessible Travel Guide

 

Wish Organizations

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).