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.abledata.com - Assistive Technology Information 

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

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

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

https://www.retailmenot.com/blog/assistive-technology-buying-guide.html - Here’s your guide to everything you need to know about buying assistive technology smartly, so you aren’t left holding a big bill at the end of the day.

https://www.vantagemobility.com/dealers/ - VMI Dealer Network offers valuable information that your readers may find useful information on Wheelchair Accessible Vans. 

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

 

Clinical Trials/Genetics/Research

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.

 

Education

https://www.accreditedschoolsonline.org/vocational-trade-school/people-with-disabilities/ - The following guide highlights the benefits of vocational education, potential careers, and laws that protect both students and employees with disabilities.

http://www.affordablecollegesonline.org/college-resource-center/resources-for-students-with-disabilities/ - specific information and resources on a variety of different disabilities, learn how to make the transition into the workforce easier, and find out what your legal rights on campus are.

https://www.affordablecolleges.com/resources/scholarships-students-with-disabilities/ - our financial experts at AffordableColleges.com have assembled a Financial Aid Guide which includes valuable resources for for Students with Disabilities.

https://www.vocationaltraininghq.com/best-vocational-training-programs-disabled/  - Best Vocational Training Programs for Disabled in 2018

 

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

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.

https://www.redfin.com/blog/disaster-safety-for-people-with-disabilities - Disaster Safety for People with Disabilities: What to Do When Emergency Weather Strikes.

https://www.autism.org.uk/socialskills - Social isolation and social interaction.

http://afntoolkit.nusura.com/resources/individuals/emergency_checklist.pdf - Be Ready to Go: Disability-Specific Supplies for Emergency Kits.

https://www.redfin.com/blog/fire-safety-for-people-with-disabilities - Fire Safety for People with Disabilities: A How-To Guide for Prevention and Evacuation.

https://www.thesimpledollar.com/how-to-plan-provide-for-a-child-with-special-needs/ - The Simple Dollar’s guide on how to plan and provide for a child with special needs.

 

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

https://www.ssa.gov/disability/disability.html - How to Apply for Social Security Disability Benefits

 

Hobbies 

https://www.cerebralpalsy.org/information/activities - Being able to participate in the kinds of activities that a person wants to, when they want to, is something that can only happen if her or she has a chance to explore hobbies, activities and interests.

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.

 

Mental and Emotional Well-being Resources

All these books are available on Amazon.com (https://smile.amazon.com/)

The Obstacle Is the Way - Ryan Holiday
References stoics and past historical heroes and their journeys during very difficult times.

Stillness is the Key - Ryan Holiday

The Little Book of Mindfulness – Patricia Collard
Small & compact – with short mindfulness exercises (5 to 10 mins) to add peace to your day.

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss - Elisabeth Kübler-Ross & David Kessler

The Six Stages of Grief – David Kessler
Continues from the 5 stages of Grief by researcher Kubler-Ross and adds a 6th stage for finding meaning in life after a loved one is lost.

Radical Self-Acceptance - Tara Brach
This particular book uses Eastern practices/beliefs from Buddhist’s teachings to heal internally – just a heads up. Still very good and you don’t have to be Buddhist to benefit from this book.

Self-Compassion - (Kristen Neff’s work)
FREE exercises & can sign up for her free self-compassion newsletter.

• Exercises / Guided Meditations
• Test how self-compassionate you are
• The author’s book on Self-Compassion

Self-Compassion Step by Step – Kristen Neff (Audio Book)
The proven power of being kind to yourself.

The Worry Trick – David A. Carbonell, PhD

The Anxious Thoughts Work Book – David A. Clark, PhD

The Untethered Soul: The Journey Beyond Yourself – Michael A. Singer

The Mindful Way through Anxiety – Susan M. Orsillo, PhD & Lizabeth Roemer, PhD

Mindful Anger: A Pathway to Emotional Freedom – Andrea Brandt, PhD

The Art of Calm: Relaxation Through the Five Senses – Brian Luke Seaward, PhD

1,001 Ways to Slow Down: The Little Book of Everyday Calm – Barbara Ann Kipfer

Unplug: A Simple Guide to Meditation for Busy Skeptics and Modern Soul Seekers – Suze Yalof Schwartz (Audio format Available)

Thin Slices of Anxiety: Observations and Advice to Ease a Worried Mind - Catherine Lepage

Do One Thing Everyday that Centers You: Mindfulness Journal - (A Robie Book)

The Peaceful Adult Coloring Book Series - (Adult Coloring Books)

• Be Inspired
  
• Keep Calm
  
• De-Stress
  
• Relax

 

Non-Profit Organizations

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

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

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

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

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

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

https://www.dystonia.org.uk/what-is-dystonia Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain

 

Parenting

https://www.fatbraintoys.com/special_needs/ - At Fat Brain Toys, we're proud to offer these collections of 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.specialneeds.com - Special Needs Project has good books about disabilities, with links to resources.

http://www.kidsource.com/#sthash.IDyKTkLF.dpbs - 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.friendshipcircle.org/blog/2011/11/10/explaining-special-needs-to-your-child-15-great-children%E2%80%99s-books - Explaining special needs to your child: 15 great children’s books.

https://www.parentcenterhub.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.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.

http://www.mychildwithoutlimits.org/act/life-planning/managing - your-childs transition-to-adulthood/ Managing Your Child’s Transition to Adulthood

https://www.bigrentz.com/how-to-guides/home-modifications - young-adults-special-needs  Transition to Adulthood: Home Remodeling for young Adults with Special Needs         

https://www.yourstoragefinder.com/special-needs-checklist-how-disability-friendly-is-your-city  Special Needs Checklist: How Disability-Friendly is Your City?

http://www.healthyeating.net.nz/wp-content/uploads/2012/09/fact-sheet-advice-for-wheelchair-bound-people.pdf - Healthy Eating Advice for Wheelchair-bound People 

www.knowledgeinitiative.org/planner Helps assist caregivers and families with planning and recording their special needs child's daily schedule. Features allow users to record medication prescribed, meals, emergency contacts, games, and other daily routines. The planner can be printed and provided to caregivers and families once its filled out.  

http://www.wonderbaby.org/articles/sleep-schedule - Developing Your Blind Child’s Sleep Schedule.

https://www.freespirit.com/files/original/Survival-Guide-for-Kids-with-Physical-Disabilities-and-Challenges-preview-1.pdf - The Survival Guide for Kids with Physical Disabilities & Challenges

 

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.

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

https://www.morganswonderland.com/  Morgan’s Wonderland San Antonio, TX

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

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

https://adaptiveadventures.org/  Adaptive Adventures Mission: To provide progressive outdoor sports opportunities to improve quality of life for children, adults and veterans with physical disabilities and their families

https://www.helpguide.org/articles/healthy-living/chair-exercises-and-limited-mobility-fitness.htm - How to Exercise if You Have Limited Mobility 

 

Remodeling/Home Improvement

https://www.improvenet.com/r/costs-and-prices/disability-remodeling-cost - Disability Remodeling - What is the Average Cost to Renovate? 

https://www.improvenet.com/r/costs-and-prices/handicap-ramp-cost - Fortunately, installing a handicap ramp is not too expensive, but there are ways to lower your project cost even further

https://www.angieslist.com/articles/how-remodel-accessibility.htm - How to Remodel for Accessibility

https://www.homeadvisor.com/r/disability-friendly-backyard-for-kids - How to Create a Backyard Sanctuary for Kids with Disabilities 

https://www.homeadvisor.com/r/budget-friendly-smart-home-accommodations-for-seniors-and-individuals-with-special-needs/#.WZ-mvT4jGCg - Home Accommodations for Special Needs

https://www.redfin.com/blog/2016/04/the-ultimate-guide-to-home-accommodations-for-persons-with-disabilities.html - The Ultimate Guide to Home Accommodations for Persons with Disabilities

https://www.homeadvisor.com/r/grants-for-home-modification/ - Grants for Home Modification: 16 Resources for Homeowners with Disabilities

 

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.miusa.org/ncde/tipsheets/airlinetips - Air Travel Tips for People with Disabilities - 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

http://www.insurancewith.com/travelling-with-a-medical-condition/ - The Essential Guide to Traveling with a Medical Condition

http://sath.org/disability-travel-websites - Society for Accessible Travel & Hospitality.  Disability travel websites worldwide

http://addisongroupnyc.com/venues/monarch/new-york-city-in-a-wheelchair/ - 7 reasons why wheelchair users should NOT avoid traveling to New York 

 

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

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

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.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.

www.wish.org Make-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.