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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 info@NBIAdisorders.org.


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



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://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.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.



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

http://www.aidnai.org  - 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



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.

http://www.parentcenterhub.org/nichcy-resources - Center for Parent Information and Resources: new home for resources compiled by the National Information Center for Children and Youth with Disabilities (NICHCY) that lost their government funding as of September 30, 2013, so they no longer have a website. Many of the articles and fact sheets they produced can now be found here and are available in both English and Spanish.

www.uhccf.org – The United Healthcare Children's Foundation is seeking grant applications from families in need of financial assistance for their child's health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child. Children must be ages 16 or younger, and families must meet economic and have a commercial health insurance plan. For a brochure on this program please go to: http://www.uhccf.org/uhccf/media/Docs/143256_Brochure-2-2.pdf.



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.



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.



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.flyingwheelstravel.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 Granting Organizations

www.goteamimpact.org - Team IMPACT improves the quality of life for children facing life-threatening illnesses by harnessing the power of teamwork by matching kids with college athletic teams.

www.akidagain.org - offers fun filled adventures, Parent’s Night Out, & Hospital visits for families in Ohio.

www.andreriveroflife.org - The Andres Sobel River of Life Foundation helps with urgent expenses to allow single parents to stay at the child’s bedside during catastrophic illness.

www.angelwish.org - Anglewish grants wishes to children with chronic illnesses.

www.awishwithwings.org - grants magical wishes for little Texans with life threatening conditions.

www.believeintomorrow.org - must be 17 years old or younger and receiving treatment at the Johns Hopkins Children’s Center. Provide programs to children nationwide.

www.b4k.org/wish.htm - Benefit 4 Kids’ Outdoor Wish program has been designed to allow children through the age of 17 with debilitating conditions or terminal illnesses an opportunity to experience the outdoors in a way they would not otherwise have the chance to do.

www.bertsbigadventure.org - provides a magical, all-expenses-paid, five-day journey to Walt Disney World for children between 5 and 12 years old with chronic and terminal illnesses and their families.

www.buckmasters.com/resources/badf/disabled-hunters.aspx - Life Hunts grants hunting trips to critically ill and extremely disabled children and young adults up to age 21. Adaptive Equipment Grants are awarded through local One Shot chapters.

www.campsunshine.org - Nestled alongside the shores of beautiful Sebago Lake in Maine, Camp Sunshine provides respite, support, joy and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families, and includes 24-hour onsite medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.

www.catchadream.org - provides once-in-a-lifetime hunting and fishing experiences for children under 18 years old who have a life-threatening illness.

www.chefdavidskids.com/mission.html - Chef David’s Kids helps children afflicted with cancer, leukemia, and pediatric HIV. They also help with neglected and abused children.

www.childrensdreamfund.org - fulfills dreams of children 3-18 who have been diagnosed with a life threatening illness.

www.childswish.com - United Special Sportsman Alliance, Inc. (USSA) is a 501(c) (3) non-profit national wish granting charity that specializes in sending critically ill and disabled youth and disabled veterans on the outdoor adventure of their dreams!

www.childrenswish.org - Grants wishes to children under the age of eighteen with life threatening illnesses.

www.childrenswishendowment.org - provides wishes to children 3-18 diagnosed with chronic, life threatening illnesses in Tammany Parish in Louisiana.

www.dcmfwishes.org - Debbie Chisholm Memorial Foundation grants wishes to catastrophically ill children in Southern California.

www.deliverthedream.org - retreat programs for families experiencing serious illness or crisis.

www.dreamalittle.org - creates a fantasy bedroom for a child who has been affected by an illness, disease, or unfortunate family event.

www.dreamfactoryinc.org - grants dreams to children diagnosed with critical or chronic illnesses who are 3 through 18 years of age.

www.dreamfoundation.org - makes dreams come true for adults facing life threatening illness.

www.dreamscometrue.org - must live in the Lehigh, PA and be between the age of 4 and 17 years old.

www.dreamsofrecovery.org - granting financial support for individuals to participate in approved therapy programs which are not covered by insurance and equipment to improve daily life.

www.ellefoundation.org - grants second wishes to 5-18 year olds in New York, New Jersey, and Pennsylvania with reoccurring cancer.

www.flyinryanhawks.org - AdventureScholarships based on financial need, character which reflects Ryan’s principals of living, and demonstrated passion and ability to pursue your adventure of choice

www.givengain.com/cgi-bin/giga.cgi?c=1305 - Reach for a Dream

www.gktw.org- Give Kids the World

www.goteamimpact.org - matching college athletic teams with children with life-threatening illness in Northeast, Mid Atlantic or Midwest.

www.grantedwish.org - grants wishes for the deserving, disabled, and disadvantaged all over the world.

www.happiness-unlimited.org - help bring adults with cancer the gift of joy

www.hopekids.org - child age 0-18 with cancer or a life-threatening medical condition enjoys program of events centered around the greater metropolitan areas of Phoenix, Minneapolis/St.Paul, Salt Lake City and Dallas/Fort Worth.

www.huntofalifetime.org - isn’t your average Make-A-Wish foundation. They grant hunting & fishing dreams for children age 21 and under, who have been diagnosed with life threatening illnesses.

www.indianachildrenswishfund.org - grants wishes to child in Indiana, ages 3-18, with life threatening illness.

www.jasonsdreamsforkids.com- grants wishes for children in the New Jersey area only.

www.kidsthatcare.net/index2.php - grants wishes in and out of the “toy” box!

www.kidswishnetwork.org - grant wishes to kids between ages 3 and 18 who are battling life-threatening conditions. Wish kids can request just about anything for their wish, such as trips to theme parks, meeting celebrities, travel, and shopping sprees.

www.lighthousefamilyretreat.org - serves children with cancer and their families at a seaside retreat to help them to laugh restore family relationships and find hope in God.

www.magicmoments.org - grants only non-medical wishes for 4-18 year old residents of Alabama.

www.makeawishindiana.org - Make A Wish Ohio, Kentucky, and Indiana Chapter

www.martylyonsfoundation.org - Applications will be accepted for “special wishes” only for children chronologically aged three (3) through seventeen (17) years. Children must also reside, or be receiving medical treatment in Florida, New Jersey or New York.

www.newhopeforkids.org - grants wishes to children under the age of nineteen with life threatening illnesses

www.outdoordream.org - grants outdoor adventures to children who have been diagnosed with terminal or life-threatening illnesses.

www.rideawave.org - gives children with special needs the chance to feel the thrill of riding a wave and experience a safe, fun-filled day at the beach, whether they are physically, developmentally or economically challenged.

www.roomtodreamfoundation.org - mission is to create healing environments in hospitals, communities, and homes for children and adolescents who are facing chronic illnesses.

www.specialwish.org - grants the wish of a child or adolescent (birth through age 20) who has been diagnosed by a physician with a life-threatening disorder.

www.spwish.org - grants wishes of children under 21 with life threatening disorder

www.starlight.org - To be eligible for acceptance into the Great Escapes family activities program, a child must have a serious illness or a severe chronic medical condition that significantly affects their day-to-day existence.

www.sunshinefoundation.org - sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children, ages three to eighteen, whose families cannot fulfill their requests due to the financial strain that child's illness may cause.

www.tenderwishes.org/contact_us - must reside in the Regional Municipality of Niagara.

www.thesamfund.org - supports young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment

www.treeofwishes.com - Wish Support Community | Tree of Wishes allows member to post and grant each other’s wishes.

www.wish.orgMake-A-Wish Foundation - grants wishes of children 2 ½ years and younger than 18 years old with a progressive, degenerative or malignant condition that places the child’s life in danger.

www.wishingwellusa.org - fulfills the fondest wish of any child not expected to reach age 18.

www.wishuponahero.com - largest social helping website. It allows people to help each other directly. Post a wish or be a hero.

www.wishuponastar.org - grants wishes of children afflicted with high risk and life threatening illnesses in California, ages 3 to 18 years old.


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