Patient and Family Resources
Administration on Aging offers elders, families, caregivers, and professionals information and resources on a variety of aging-related topics. The information will help you become more familiar with issues affecting older adults, and the services and opportunities available to assist them.
American Association of Retired Persons (AARP) is dedicated to enhancing the quality of life for people age 50 and over by leading positive social change and delivering value to people through current information, advocacy, and service.
Eldercare Locator is a nationwide service that connects older Americans and their caregivers with trustworthy local support resources.
National Institute on Aging is where you can find science-based information on health and aging and Alzheimer’s. Get research news & funding opportunities from the National Institute on Aging at NIH.
Online Resources for Senior Citizens has a comprehensive resource list for senior citizens.
Animal Assisted Services
Guide Dog Foundation guides dogs are provided free of charge. This includes training, transportation to and from the school, room, and board during the two-week training program, as well as aftercare services. All dog equipment including collar, harness, leash, grooming supplies, and one year’s worth of heart worm and flea and tick preventative will be provided at no cost. Additionally, each student will receive individualized training relevant to their home environment and lifestyle.
Guide Dogs for the Blind has a regular adoption fee of $750, beyond which all of the services for their clients are provided free of charge, including personalized training and extensive post-graduation support, plus financial assistance for veterinary care, if needed. This includes a free Orientation & Mobility (O&M) Immersion Program for people interested in developing the O&M skills that are most relevant to guide dog mobility and financial assistance for veterinary care.
Guide Dogs of America registers a Service Dog through the Americans with Disabilities Act and apply to find a trained, registered dog.
Guiding Eyes for the Blind provides dogs free of charge to people who can benefit from their partnership. This includes training, transportation to and from the school, room, and board during the training program, and a lifetime of follow-up services.
The National Federation of the Blind finds trusted guide dog schools in your state.
Pets for the Elderly is a 501 (c)(3) public charity whose mission is to provide companionship to senior individuals through pet ownership, while saving the lives of companion animals in shelters; animals which might otherwise be destroyed due to lack of appropriate homes, and space limitations.
USA Service Dog Registration provides pet certification, which, although not required by law, can help ensure your rights will be respected by businesses, landlords, etc. Although doctors and trained professionals may recommend the use of a service dog when one has a disability that substantially limits his/her ability to perform at least one major life task without assistance, a doctor’s note is not necessary to get one.
Aging Parents and Eldercare has articles, comprehensive checklists, and links to key resources designed for family caregivers.
Caregiver Action Network educates, supports, empowers, and speaks up for the millions of Americans who care for chronically ill, aged, or disabled loved ones.
Caregiver.com is a single source of information, advice, and support for caregivers. Get access to caregiver training, tips, the best apps available, and find resources near you. Navigate the ins and outs of doctors’ offices, endless hours on the phone with insurance companies, midnight dashes to the hospital, life and death decisions, heartaches, and stress, with countless tips for fellow caregivers.
Caregiver Help is a video-based caregiver support program that helps family and professional caregivers get a handle on their anger, stop feeling guilty, deal with depression, cope with grief, and manage dementia-related challenging behaviors. It’s unique in that it uses humor and storytelling to coach people through a process that helps them develop a plan for self-care in order to avoid caregiver burnout.
Caring.com provides information and support for people caring for aging parents, spouses and other loved ones.
Children of Aging Parents (CAPS) assists caregivers of the elderly with information and referrals, a network of support groups, and publications and programs that promote public awareness of the value and the needs of family caregivers.
Easter Seals provides disability, employment, development, and even in-home care services for all ages, as well.Find out what it means to be a caregiver, and what to expect.
Family Caregiver Alliance (FCA) provides support and help to family caregivers and champions their cause through education, services, research, and advocacy. Services are specific to California, although information can be accessed nationally.
Family Caregivers Online is an educational and informational resource for anyone who helps an older spouse, parent, relative, friend, or neighbor; provides online education, FAQs, phone numbers, newsletter articles, and a site for employers and human resource professionals.
Home Instead provides an informative website to help family caregivers find ways to cope with caregiver stress, in order to make their role more rewarding. A caregiver who takes care of herself or himself-body and mind — will ultimately be a better caregiver to a loved one.
Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need with an easy-to-use, private group online calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other necessary tasks. There is no cost to your family to use this system.
National Alliance for Caregiving is a website where caregivers can learn about information, videos, pamphlets, etc., that have been reviewed and approved as providing solid information.
NIH Senior Health is a web site for caregivers managed by the Centers for Medicare and Medicaid Services that provides information about Medicare and other topics important for caregivers to help them with caring for loved ones.
Today’s Caregiver offers caregiving information, support and resources for family and professional caregivers including disease specific articles, expert answers and email newsletters.
Well Spouse Association is a national membership organization that gives support to husbands, wives, and partners of the chronically ill and/or disabled. Well Spouse has a network of support groups and also a newsletter for spouses.
Chronic Headaches, Pain and Migraines
Alliance for Headache Disorders Advocacy (AHDA) advocates for equitable policies for people with headache disorders.
American Academy of Pain Medicine is a non-profit organization that educates clinicians about pain and its management through an integrative interdisciplinary approach.
American Chronic Pain Association (ACPA) operates as a non-profit organization. The organization provides individuals with peer support and education in pain management skills.
American Headache Society is a preeminent professional society of health care providers dedicated to the understanding & treatment of headaches and face pain.
American Migraine Foundation (AMF) mission is to support innovative research that will lead to an improvement in the lives of those who suffer from migraine and other disorders.
Association of Migraine Disorders is devoted to expanding the understanding of migraine disease and its true scope.
Canadian Headache Society is an important resource for migraine sufferers based in Canada. Read articles and get updates on migraine-related news.
Chronic Migraine Awareness, Inc. is a non-profit organization working hard to help ease the lives of people with chronic migraines.
Cluster Busters supports research for better treatments and a cure while advocating to improve the lives of those struggling with cluster headaches.
The Coalition For Headache And Migraine Patients (CHAMP) is a new organization that provides support to people with headache, migraine, and cluster diseases who are often stigmatized and under-served.
Danielle Byron Henry Migraine Foundation is a nonprofit that provides support and access to treatment for those living with migraine disease, especially young adults and children.
International Headache Society International membership organization for those with a professional commitment to helping people affected by headache.
Migraine World Summit is an international, free, and virtual event that brings together over 30 world-leading migraine experts, doctors, and specialists.
Miles for Migraine Improves the lives of migraine patients and their families, raises public awareness about headache disorders, and helps fund a cure for migraine by producing fun walk/runs and hosting youth camps
National Headache Foundation is a leader in headache and migraine awareness, providing headache research and migraine research and resources for those suffering from severe migraines and headaches.
U.S. Pain Foundation is a non-profit organization dedicated to serving those who live with pain conditions and their care providers.
American Association on Health and Disability (AAHD) Scholarship Program supports students with disabilities who are pursuing higher education. Preference will be given to students who plan to pursue undergraduate/graduate studies in the field of public health, health promotion, or disability studies, to include disability policy and disability research.
American Association on Health and Disability offers a scholarship of up to $1,000. The scholarship requires an essay shorter than 2 pages, including brief personal history, educational and career goals, extra-curricular activities, and reasons why you should be selected by the AAHD Scholarship Committee. It also needs two letters of recommendation and a college transcript.
American Foundation for the Blind offers up to $3,500 for visually impaired students seeking higher education.
Lighthouse Guildis for the legally blind and provides students with funds through college and graduate education.
Minc Law provides a $1,500 scholarship for students, requirements include writing a 1,000 word essay on cyberbullying and federal action against it.
Patient Advocate Foundation Scholarship provides a scholarship up to 3,000. Applicants must write an essay (1000-word maximum) on how their diagnosis has impacted their lives and future goals. Two letters of recommendation are also required.
Scholly is an online search platform that helps high school seniors, current undergraduates, and graduate students match and win scholarships.
Scholarship America finds scholarships personalized to you across the nation.
Terrill Foundation provides scholarships to support higher education for a high school senior affected by neurologic diseases/brain injury through tuition to an institute for advanced learning. Requires a written essay, and intent to attend higher education.
Will2Walk Foundation offers scholarships up to $5,000 for those who are impacted with a viral, bacterial, tumor, or other related disorders that impact the spinal cord.
Center for Parent Information & Resources evaluates children for a disability, IDEA’s qualifications for a disability, and determines eligibility.
Great! Schools.org educates you on what an IEP is, a parent’s role in an IEP meeting, tips on how to put an education plan into action, and related services available to parents, students, and the school involved.
Great! Schools.org Special Education the purpose, procedures, and laws for evaluating a child for special education services (applies to both 504 and IEP).
Managing Chronic Health Needs in Child Care and Schools is an all-new guide that provides resources and strategies to help care for children with chronic medical conditions and special health care needs in the community and school setting.
Pacer’s National Bullying Prevention Center helps people learn the warning signs of, and how to prevent, bullying, and harassment of students with disabilities.
PACER Teens Against Bullying provides innovative resources for students, parents, educators, and others, and recognizes bullying as a serious community issue that impacts education, physical and emotional health, and the safety and well-being of students through digital-based resources for parents, schools, teens, and youth.
Stopbullying.gov is a federal government website managed by the US Department of Health and Human Services.
Employment, Disability and Legal Issues
Americans with Disabilities Act is your gateway to information about the Americans with Disabilities Act (ADA).
Disability Benefits Center is dedicated to providing the public with information on the disability benefits process.
Career Crossing helps identify your personality type using the Myers-Briggs Type Indicator (MBTI) will help you choose a career that’s right for you. On the job, you deal with people of different types. A basic understanding of how types communicate is invaluable.
Disability & Hydrocephalus: Social Security Benefits & Filing Information explains how to navigate being unable to work due to limitations, and getting disability for hydrocephalus. Explore RCFs and determine when you need an attorney.
Disability Secrets learn more about disability availability.
Hydrocephalus and Social Security Disability learn about qualifying for SSD under the Blue Book with hydrocephalus, Medical-Vocational Allowance, and get help with Your SSD Application.
The Invisible Disabilities Association (IDA) encourages, educates, and connects people and organizations touched by illness, pain, and disability around the globe. Formerly known as The Invisible Disabilities Advocate.
Job Accommodation Network (JAN) helps navigate the Americans with Disabilities Act, find a job that fits you, contact Union Representatives, and receive free consulting services for all rehabilitation and medical professionals.
National Organization on Disability is a private, non-profit organization that promotes the full participation and contributions of America’s 57 million people with disabilities in all aspects of life. NOD focuses on increasing employment opportunities for the 80-percent of working-age Americans with disabilities who are not employed.
National Telecommuting Institute has helped people with severe disabilities find work-at-home jobs. Through NTI@Home, between 500 to 600 Americans with physical disabilities each year are placed as home-based call center agents with business and government partners.
Patient Advocate Foundation (PAF) has case managers advocate and mediate on behalf of patients to provide avenues of access for therapies, therapeutic agents and devices deemed medically efficacious by the medical and scientific communities while working to find sources of reimbursement to pay for care.
Residual Functional Capacity is an assessment for you that details your physical abilities, mental and sensory abilities.
Social Security Administration is the first step when applying for SSDI. From there, the claims examiner who works for Social Security will look at limitations caused by hydrocephalus to determine whether or not you can perform any type of work.
Social Security Disability is a federal program, supported by payroll taxes, that pays benefits to people who cannot work due to a medical condition.
Social Security and Disability Resource Center provides a detailed overview of how the federal disability system works (social security disability and SSI) and also provides answers to many questions that applicants typically have, but often have trouble finding answers to.
The Work Site: Ticket to Work is for people receiving SSDI or SSI by helping them obtain employment services, rehabilitation services or other support services to achieve a vocational goal.
Air Care Alliance will introduce you to several groups whose volunteers perform public benefit flying for health care.
AmeriCares serves uninsured and underinsured individuals by providing life-saving medications to qualified, low-income individuals and families at no cost, through generous donations from AmeriCares pharmaceutical partners.
Angel Bus is a non-profit charity dedicated to providing financial assistance for non-emergency, long-distance ground transportation to patients in need.
The Assistance Fund (TAF) offers financial support for specific diagnoses. Help patients facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.
Cerebral Palsy Guidance provides vital guidance and assistance to parents of a child with cerebral palsy.
Chai Lifeline is a not for profit organization dedicated to helping children suffering from serious illness as well as their family members. We offer a comprehensive range of services to address the multiple needs of patients, parents, and siblings.
Dental Lifeline is a 501(c)(3) nonprofit organization, founded in 1974, that nationally provides access to dental care and education for people who cannot afford it.
EyeCare America provides eye exams and up to one year of care to US citizens and legal residents within the continental U.S, Hawaii and Puerto Rico through volunteer ophthalmologists (EyeMDs) often at no out-of-pocket cost to those who meet eligibility criteria.
First Hand Foundation is closing the gaps in health care for children around the world through individual grants and wellness programming.
Free Gas USA, Inc provides grants for fuel purchases ranging from $50 to $1,200 dollars. Qualified applicants must meet the federal guidelines of living at or below the poverty level and submit an agency referral with their application.
Friends of Man is a 501(c)(3), non-profit, tax-exempt charity using 100% of donations for charitable assistance. We work through Referring Professionals (caseworkers, case managers, health care workers, social workers, counselors, teachers, clergy) who apply on behalf of their patients and clients needing mobility equipment, prosthetics, glasses, dentures, hearing aids, and much more!
Good Days offers financial support for specific diagnoses. Good Days is here to help: helping overcome the burden of treatment costs, connecting you to a community that cares. We not only make life-saving and life-extending treatments affordable, we act as your advocate, helping you navigate the system and guiding you to additional support through foundations and other organizations dedicated to those with specific, life-altering conditions.
Healthwell Foundation is a non-profit organization that offers financial assistance to patients living with chronic and life-altering illnesses to help pay their share of prescription drug copayments, deductibles, and health insurance premiums.
Homeownership Preservation Foundation helps homeowners navigate financial challenges and avoid mortgage foreclosure.
Miracle Flight for Kids provides free air transportation for sick or disabled children to medical facilities throughout the United States through the purchase of commercial airline tickets, and by coordinating the airline scheduling.
Modest Needs provides small, no-strings-attached, financial grants for short-term immediate crisis situations for working families
National Institute of Dental and Craniofacial Research is the federal government’s lead agency for scientific research on dental, oral, and craniofacial health and disease. It provides an online list of possible resources for finding low-cost dental care.
National Organization for Rare Disorders (NORD) offers financial support for specific diagnoses. NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Patient Access Network (PAN) Foundation is an independent 501©(3) organization dedicated to providing help and hope to people with chronic or life-threatening illnesses for whom cost limits access to breakthrough medical treatments.
Patient Services, Inc. (PSI) provides financial support and guidance for qualified patients with specific, rare chronic diseases.
Ronald McDonald House creates, finds and supports programs that directly improve the health and well being of children, Ronald McDonald House Charities is working to better the lives of children and their families around the world.
UnitedHealthcare Children’s Foundation is a non-profit charity dedicated to enhancing the quality of children’s lives through much needed medical grants.
Kaiser Permanente can help you to understand what to expect after surgery. In certain situations, hydrocephalus and shunt surgery can cause symptoms or side effects including dementia, vision issues, migraines, muscle soreness, instability, and coordination issues; making living home alone difficult. Stairs and driving may also pose a danger to a patient with hydrocephalus.
Medicare Patient Lifts persistent symptoms, installing a stairlift or ramp may be deemed necessary. A ramp will have to be medically necessary as declared by a licensed physician.
Medicare Approved Home Health Services helps you find a home health agency covered by Medicare. Access to information, like how Medicare covers home health care and a home health agency checklist when comparing home health agencies.
Medicare-participating suppliers helps you find nationwide suppliers of durable medical equipment, including shunts, ramps, and wheelchairs.
Center for Medicare Advocacy, Inc. is a national non‑profit, non-partisan organization that provides education, advocacy, and legal assistance to help elders and people with disabilities obtain Medicare and necessary health care. The Center was established in 1986. They focus on the needs of Medicare beneficiaries, people with chronic conditions, and those in need of long‑term care. The organization is involved in writing, education, and advocacy activities of importance to Medicare beneficiaries nationwide.
Centers for Medicare and Medicaid Services is a federal agency within the United States Department of Health and Human Services (HHS) that administers the Medicare program and works in partnership with state governments to administer Medicaid, the Children’s Health Insurance Program (CHIP), and health insuranceportability standards.
Children’s Health Insurance Program (CHIP) assists you to learn about coverage options for your family for free or low-cost health, insurance coverage, and dental coverage through Medicaid & the Children’s Health Insurance Program
Foundation for Health Coverage Education provides information on public and private health insurance eligibility requirements in a simple, straightforward manner. You can find booklets, pamphlets, and web tools that can help you find coverage.
Healthcare.gov helps you learn about the provisions of the new healthcare law at this Web site, managed by the US Department of Health and Human Services. The site includes information by state and explains key parts of the new law, including how to get coverage if you have a pre-existing condition.
Medicaid is a state program that assists eligible low-income individuals and families financially by sending payments directly to health care providers.
Medicare is a federal health insurance program for people who are 65 or older and for certain younger people with disabilities, that pays for medical care for people who qualify. Information on eligibility requirements, the different parts of Medicare, and how to apply can be found here.
Medicare Rights Center is an independent source of healthcare information and assistance for older and disabled Americans, their caregivers, and the professionals who serve them. Medicare Interactive (MI) is the one-stop source for information about health care rights, options, and benefits and it is designed to help people find answers to all their Medicare questions. The website also has a list of phone numbers for each state’s “State Health Insurance Assistance Program.”
Patient Advocate Foundation provides patient services, eliminating obstacles in access to quality healthcare.
Medical Equipment/Home Adaptation
Adaptive Mobility Systems is dedicated to educating their customers and making sure you get the accessible van that is right for your needs.
Mobility Advisor is an educational guide on wheel chair options, mobility aids, disability resources, and recreational outlets that enhance the lives of individuals of all ages who need mobility assistance
Special Kids Fund is a unique children’s charity alliance of social service organizations, hospitals, camps and schools caring for developmentally disabled children and at-risk youth.
National & International Organizations
American Brain Tumor Association is the nation’s oldest nonprofit organization dedicated to brain tumor education, support, and research.
The American Syringomyelia & Chiari Alliance Project, Inc (ASAP’S) mission is to improve the lives of persons affected by syringomyelia, Chiari malformation, and related disorders while we find the cure.
Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF)‘s goal is to raise awareness and find a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders. The Chiari & Syringomyelia Foundation is a non-profit organization founded in 2007, ultimately licensing the name of Bobby Jones in 2019 to become the Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF). They have funded over $6 million dollars worth of education and research projects/meetings in its initial years and has impacted more than 3.5 million people around the world, who are looking for answers.
The Brain Recovery Project helps children reach their full potential after brain surgery to stop seizures.
Chiari Project is a 501(c)3 Non-Profit Organization that concentrates on awareness, advocacy, and research for Chiari Malformation, Syringomyelia, and related neurological conditions. The goal is to discover solutions for improving the quality of life of those affected by these painful conditions.
The Children’s Brain Tumor Foundation was founded in 1988 by a group of dedicated parents, physicians and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors.
Cure Hydrocephalus is a division of CURE International committed to saving lives by eliminating untreated hydrocephalus and its preventable causes through training, treatment, and research. Since 2000 through efforts emanating from CURE Children’s Hospital of Uganda (CURE-Uganda) in Mbale, over 5,000 lives have been saved, ten surgeons from nine different countries have been trained, and ground-breaking research has been shared through publications in peer-reviewed journals.
Dandy Walker Alliance is an all-inclusive organization including people directly and indirectly affected by Dandy-Walker who share an interest in educational, informational activities and supporting nonpartisan research to increase public awareness of Dandy-Walker syndrome.
Epilepsy Foundation is a trusted, family-led organization that works to accelerate research and educate individuals about epilepsy, what triggers seizures, and much more.
Hydrocephalus Canada, formally known as the Spina Bifida and Hydrocephalus Association of Ontario became Hydrocephalus Canada in November of 2017. They transitioned to an organization with a national mandate and responsibilities to a much larger community.
Hydro-KIDS is Integra Life Sciences’ comprehensive website which includes information and resources for kids, parents, and caregivers about pediatric hydrocephalus. It also has fun and games around Benny the Bear, one of the only bears with a shunt!
International Federation for Spina Bifida and Hydrocephalus is the worldwide umbrella organization (NGO) for hydrocephalus and spina bifida. It was established in 1979. Today the IF’s membership includes national umbrella organizations for hydrocephalus and spina bifida in over 40 countries.
Life-NPH is Integra Life Sciences’ comprehensive website that includes information and resources for adults and caregivers impacted by normal pressure hydrocephalus (NPH).
National Brain Tumor Foundation (NBTS) invests in, mobilizes, and unites communities to discover a cure, deliver effective treatments, and advocate for patients and care partners.
National Institutes of Health (Hydrocephalus) is NIH’s website where you can learn about hydrocephalus, current treatment, prognosis, the research being done, and where you can get more information.
Shine (Spina bifida • Hydrocephalus • Information • Networking • Equality) was formed in 1966, initially to help families and individuals affected by spina bifida and hydrocephalus.
Spina Bifida Association’s mission is to build a better and brighter future for those impacted by Spina Bifida.
GoodRX allows you to compare prescription drug prices and find coupons at more than 60000 US pharmacies.
Medicine Assistance Tool (MAT) helps patients, caregivers and health care providers find information about financial assistance and other resources.
Medicine Program is for persons who do not have coverage either through insurance or government subsidies for outpatient prescription drugs and for those who cannot afford to purchase medications at retail prices.
Needy Meds offers information on state-based prescription assistance programs and government-funded programs.
The Partnership for Prescription Assistance provides a single point of access to more than 475 public and private patient assistance programs that could offer help on more than 2,500 prescription medicines, including a wide range of generics.
PhRMA’s Medicine Assistance Tool (MAT) is a search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs.
RxAssist is an online resource center with information about patient assistance programs, Medicare Part D, programs for low cost medications and other issues related to pharmaceutical access.
Rx Hope is exactly what its name implies…a helping hand to people in need in obtaining critical medications that they would normally have trouble affording.
Rx Outreach is a non-profit pharmacy making medications affordable for you and your family.
Together Rx Access Program offers a free prescription-savings card for residents of the United States and Puerto Rico who have no prescription drug coverage and are not eligible for Medicare. Cardholders may save as much as 40% on brand-name prescription medicines, though restrictions apply. Some generic medications may also be included in the card program.
American Academy of Clinical Neuropsychology (AACN) supports continued maintenance of standards in Clinical Neuropsychology through the established board certification process of ABCN. AACN supports the continued development of the ABCN examination process, and advocates for the standards represented by board certification. AACN helps patients find a board-certified neuropsychologist.
American Association of Neurological Surgeons (AANS) is the association that speaks for all of neurosurgery, and is dedicated to advancing the specialty of neurological surgery in order to promote the highest quality of patient care. Find a board-certified neurosurgeon in your area and visit their website for patients.
American Academy of Pain Management is a non-profit organization that educates clinicians about pain and its management through an integrative interdisciplinary approach.
American Board of Pediatric Neurological Surgery (ABPNS)‘s goal is to encourage the study, improve the practice and elevate the standards of pediatric neurological surgery, and advance the cause of public health.
American Chronic Pain Association (ACPA) operates as a non-profit organization. The organization provides individuals with peer support and education in pain management skills.
American Headache Society is a preeminent professional society of health care providers dedicated to the understanding & treatment of headaches and face pain.
Child Neurology Foundation (CNF) is a center for children, caregivers and medical professionals. CNF is committed to helping children and their families living with a neurologic condition receive the best quality of care — and achieve their highest quality of life — by providing information, education, and one-on-one support when it’s needed most.
Congress of Neurological Surgeons (CNS) provides members with the educational and career development opportunities they need to become leaders and innovators in the field. Articles, publications, meetings, and training opportunities are available.
Transitioning from Pediatric to Adult Care
American College of Physicians provides a list of parents and providers can use with families of teens with intellectual disabilities (ID) and/or developmental disabilities (DD).
Got Transition ® is the federally funded national resource center on health care transition (HCT). Its aim is to improve transition from pediatric to adult health care through the use of evidence-driven strategies for health care professionals, youth, young adults, and their families.
Child Neurology Foundation (CNF) Transition of Care Program is the largest and most diverse program—helps to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems.
Travel and Transportation
AirMed offers international transports on a fee-for-service basis virtually anywhere in the world. Trip rates are based on many factors, including aircraft mileage, medical team configurations, landing fees, ground transportation costs, and medical supplies.
Air Charity Network has been coordinating free air transportation for children and adults with medical or compelling humanitarian needs for more than 25 years.
Allianz Global Travel Insurance offers insurance abroad, which can help cover trip cancellation, protection, trip interruption protection, emergency medical transportation, and emergency medical/dental coverage, in case of an emergency.
Angel Flight East provides free, non-emergency air transportation to qualified patients and their families by arranging flights to distant medical facilities, delivering supplies to disaster areas, and reuniting families during desperate times.
Angel Flight West provides free, non-emergency air travel for children and adults with serious medical conditions and other compelling needs.
Civil Rights for Travelers TSA security screening policies, procedures and practices must comply with all applicable civil liberties and civil rights laws, regulations, executive orders and policies and must not discriminate against travelers on the basis of race, color, national origin, sex, religion, age, disability, genetic information, sexual orientation, and parental status.
CheapOair Traveling with Disabilities offers resources for children and adults with physical disabilities who are going to be traveling.
Department of State is where you can renew your passport, check the status of your application, read frequently asked questions, and much more.
International Association for Medical Assistance to Travelers (IAMT)’s goal is to coordinate medical services worldwide for travelers and to prepare them for their journey. Locate doctors and clinics abroad, health risks in destinations, and even discover what there is to know about healthy travel for seniors
Medicare.gov allows you to search your test, item, or service to see if it is covered abroad. Determine what medicare will cover abroad.
MedicareInteractive.org helps protect yourself from any unexpected injuries, illnesses, or changes in travel plans that begin with selecting a US travel insurance policy that best fits your needs. Know what to look for in an abroad insurance plan.
Mercy Medical Angels removes the barrier to medical care with transportation on the ground and in the air.
Miracle Flights provides free flights to those in need of life-changing medical care not found in their local communities.
Mobility International USA helps you learn how to navigate having (or not) Medicare or Medicaid abroad.
PALS Patient Airlift Services is a 501(c)(3) nonprofit that arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially.
Referral Request for Charitable Transportation provides assistance in getting transportation to receive medical treatment. They provide assistance in the air with commercial airline tickets and volunteer pilots and on the ground with gas cards, bus, and train tickets.
Security Screening prepares travelers for the security measures they will encounter when preparing to fly
TSA Cares is a helpline that provides travelers with disabilities, medical conditions, and other special circumstances additional assistance during the security screening process.
TSA Disabilities and Medical Conditions help you determine how medications, services animals, implants, low vision, or other limitations will affect your travel.
Travelers with Disabilities provides information about service animals, assistive equipment, and medical considerations.
Traveling with a Medical Condition is the essential guide to traveling with a medical condition.
TSG Country Information provides travel advisory, alerts and other important details specific to a country that could affect your travel.
Ultimate Guide to Air Travel with a Disability offers tips and advice on how to make navigating airports and air travel a more enjoyable experience.
Aimed Alliance is a 501(c)(3) not-for-profit health policy organization. The mission of Aimed Alliance is to protect and enhance the rights of health care consumers and providers
A World of Information on Pain is a unique online resource offering the most up-to-date pain and pain management information on a variety of different topics written by medical professionals for both the consumer and healthcare specialist.
American Medical ID provides engraved jewelry for men, women, and children, alerting first responders of Medical conditions, drug and food allergies, prescribed medicines and emergency contactsto provide patients in an emergency with the care they need.
Family Voices, Inc. offers information on healthcare policies relevant to special needs children in every state.
FindLaw helps you find trusted, free legal information, news, DIY forms and access to local lawyers.
Guidestar helps seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities.
Lauren’s Hope provides engraved jewelry with medical information.
Medic Alert Foundation provides medical IDs so that emergency responders and health professionals will have access to your most critical information immediately and be alerted to call Medic Alert to get additional medical information. This ensures you are protected and receive proper treatment and care when it matters most.
Pain Management Specialists has information on pain management for chronic back pain, pain management techniques, and pain management specialists
SmartWatch Inspyre™ is a new application which uses a unique algorithm to recognize a wearer’s repetitive shaking movements that may indicate a convulsive (tonic-clonic) seizure is occurring. The application can send alerts to family members and caregivers so they can come to the aid of the person having a seizure. Smart Monitor’s SmartWatch solution is already available on other wearable device platforms including Android devices.
Sticky Jewelry offers engraved medical ID bracelets and necklaces for men and women, starting at $10.