This resource is provided so you can quickly access materials on a specific disease or condition. Doctors have a limited amount of time to explain a diagnosis. And your brain is very likely is slow to process a lot of new information at one time. And, always, you think of a dozen questions after an appointment, especially with a diagnosis you may not have even expected. The websites below are trusted sources with information based on approved medical research and expert knowledge to help you understand, ask questions so you (and your loved one, if possible) can make sound decisions. . Everyone’s journey with any disease is different so. . . . .
Always see your physician or other qualified health provider for answers to questions and specific advice regarding a disease or medical condition you or your loved one may have.
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Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Click on Help and Resources to find information on caregiving. If your Loved One has FTD, click on the Difference between Dementia and Alzheimer’s which drops down from “Alzheimer’s and Dementia” button on the home page.
Alzheimer’s Foundation of America AFA was founded by a family caregiver to be a resource for caregivers and a place they can turn to for help, guidance and support in their time of need. Provides excellent caregiver support, online memory screening and grants for innovative solutions or help for Alzheimer’s. A very thoughtful website. Newsletter sign up and translator.
Association for Frontal Temporal Degeneration Click on the “Find Support” button for a list of resources that will help you advocate for your LO with these little known diseases. This is a site we used frequently and has grown considerably, to provide not only information, but funding for research and education. They also offer small grants to families. We were recipients and purchased a wheelchair coat (winter on the Great Plains!), items to keep the hands busy, adaptive clothing. These improved quality of life for Wheels – and for us the caregivers!
Dementia Society of America Their programs bring much-needed education, local resources, and life enrichment to individuals and families impacted by Dementia. Click the “Information” button to link to podcasts, youtube with 2-3 minute videos on different topics, blog posts and use the “Resources” button to subscribe to a free email newsletter.
Lewy Body Dementia Association Lewy Body Dementias (LBD) affect an estimated 1.4 million individuals in the United States. This is also a Frontal Temporal Degeneration disease. Through outreach, education and research, we support those affected by Lewy Body dementia, their families and caregivers. . . dedicated to raising awareness and promoting scientific advances. Helpful and informative. Check out the “Resources” tab for information on the disease, caregiving and more.
The National Task Group on Intellectual Disabilities and Dementia Practices “The ‘NTG’ is a not-for-profit organization to ensure interests of adults with intellectual and developmental disabilities affected by Alzheimer’s disease and other dementia – as well as their families and friends – are taken into account. The NTG’s overall mission is to advocate for services and supports. . . ..” Information can easily be accessed by topic from the main page.
Laurent Clerc National Deaf Education Center The Clerc Center Online Community is home to hundreds of best-practice videos, research, toolkits, and resources for families of deaf and hard of hearing children and the professionals who work with them. Best practices in the education of deaf and hard of hearing students from birth to 21. Our work supports families and caregivers, education and healthcare professionals, and state leaders.
My Deaf Child American Sign Language is an important developmental tool that will help your child acquire a foundation for thinking and language (signed or spoken). Learning just a few simple signs will help you start to communicate and connect with your child! Sign It ASL is a new online ASL class that introduces parents like you to American Sign Language. Click the “Learn ASL” button to find out more. Check out the Resources tab as well.
American Diabetes Association If your LO has diabetes and you need more information, head here. Looking for ideas for meals- check out the “Food and Nutrition” tab. Newly diagnosed or just prescribed a CGM – there is information on those and many other topics as well. Their magazine website, Diabetes Forecast, is also helpful, as is the print edition. The Diabetes Food Hub has information and recipes for diabetes friendly eating. The Consumer Guide provides information on diabetes equipment and supplies in a helpful comparison format.
Diabetes Foundation We are determined to provide access to free services to free services in New Jersey. Provides free online information and tools to manage diabetes to all, including how to eat healthy, monitor blood sugar and recipes.
Diabetes Self Management is a well respected source of information on managing your diabetes, both on the website and magazine, which is available in print or digital edition.
National Down Syndrome The organization empowers individuals with Down Syndrome and their families by driving policy change, providing resources, engaging with local communities and shifting public perceptions. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all. Check out the Resources and Support Tab for information in several different languages.
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National Eye Institute – Common Eye Conditions and Diseases A comprehensive list of eye diseases with links to information on each one. Booklet on Cataracts is here. Age Related Macular Degeneration here Diabetic Eye Disease here Many more listed.
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National Fibromyalgia Association Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 5 to 8 million Americans. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities. Start with the Fibromyalgia tab for information on this condition. Resources tab will lead you to information on living with fibromyalgia. Wish this had been available when I was diagnosed after an auto accident! Also listed in Autoimmune Disease.
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Hearing Loss Association of America The Hearing Loss Association of America (HLAA) nationwide community offers education, connection and support to the growing number of people with, and at risk of, hearing loss. Hearing loss is the diminished ability to register sound in one or both ears, and it affects more than 50 million people in the U.S. alone, with many more at risk. It can develop over time, or happen suddenly, for people of all ages. Resources, information and advocacy. Has information on buying over the counter hearing aids, understanding hearing loss and advocating for those with hearing problems.
American Speech-Language Hearing Association is an organization for professionals. However, on this page you can search for an audiologist (hearing specialist) or a speech language specialist ( speech problems) near you. You will need a doctor’s referral to see them, but it can be helpful to have this information ahead of time. This profession can help dementia patients and others maintain or adapt their communication abilities, among other wonders!
American Heart Association and American Stroke Association Start here for information on these two diseases. The Health Topics button will lead you to information on specific issues, such as aortic aneurysms, arrhythmia, atrial fibrillation. The practical and helpful caregiver support is accessed here
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National Incontinence This website earns an exemption to our no sales websites policy. They do sell many brands of adult briefs, bed pads and other essentials, but you can access valuable information whether you buy or not. Information includes types of incontinence, how to choose the best product, tips from how to use products, hygiene, removing odors and stains, types of bedding to use and more. Also a blog on topics such as blood sugar and incontinence, adult swim briefs or a wearable device that senses bladder expansion and alerts when it’s time to use the bathroom. A Simon Foundation for Continence Website.
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National Kidney Foundation The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience. Topics include Kidney health, therapies including home dialysis, and kidney transplants.
American Kidney Fund – If you have kidney failure but are unable to afford the cost of your health insurance premiums, you may qualify for the American Kidney Fund’s Health Insurance Premium Program. Safety Net Grant Program helps people with health care expenses that are not covered by insurance. Also has information about the different types of kidney disease, as well as the treatments available, including kidney donation and transplantation.
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American Lung Association “When you can’t breathe, nothing else matters.® Our mission is To save lives by improving lung health and preventing lung disease”. Blog covers a variety of topics related to breathing and lung health, search bar to find specific information and a translator.
Lupus Foundation of America our mission is to improve the quality of life through programs of research, education, support and advocacy. We have the trusted information you need to learn about lupus in our extensive library. Information available on diagnosing, living with lupus.
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Mental Health America the nation’s leading national nonprofit dedicated to the promotion of mental health, well-being, and illness prevention. “Get Help” will provide information for you to find help for yourself or someone else. “Get Information” has information about mental health facts and conditions, policy measures, and more, our research and reports, webinars, podcast, blog, and screening tools provide guiding resources and tools to help understand and improve your mental health.
Muscular Dystrophy Association MDA has led the field in research, care, and advocacy for people living with neuromuscular diseases. Links to specific diseases are found here. Click on the Care and Services tab to find information on providing care, resources for caregivers and more. There are also tabs to connect with other MDA families, where to find Support, and Resources, including financial support and clinical research opportunities.
Multiple Sclerosis Association of America Multiple sclerosis (MS) is an autoimmune disease affecting the central nervous system. A variety of symptoms are possible, often beginning with periods of flare-ups and remissions. Information on the disease, help offered by the Association, and living with MS.
National Multiple Sclerosis Society Information on types of MS, what to know and do when newly diagnosed, find doctors experience in treating MS, how to manage MS. and support to navigate the best life through the challenges of MS
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Nursing Home Abuse Center – I chose this site because it has a great deal of information about a little discussed topic – Elder Abuse, particularly in a nursing home. Whether you choose to use the services of the law firm associated with the site is up to you. The information here seems to be factual without being sensationalized and is aimed toward clarification of the topic. They also offer options in how to deal with elder abuse, where and how to report, finding an ombudsman and other ways to deal with abuse before resorting to legal action. In other words, it’s good information to help you decide what to do and perhaps, confirm that little voice that is saying “this is not right”. Associated with Sokolove Law Center
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Organ Donor Information on organ donations: how to register as a donor, how matches are made, statistics on donations and more.
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Paralyzed Veterans of America PVA’s mission is to ensure that every Veteran of every age, every branch, and every conflict regains what they fought for: their freedom and independence. We are the only nonprofit Veteran Service Organization dedicated solely to helping Veterans with spinal cord injuries and disorders (SCI/D), and diseases, like MS and ALS. Our work impacts every aspect of a Veteran’s life journey, from Day One of their injury or diagnosis.
American Parkinson’s Disease Association Comprehensive coverage of Parkinson’s disease and how to live the best possible life following diagnosis. Start here APDA offers numerous other specialized resources to help you understand your diagnosis, connect with care, and navigate your next steps with confidence and hope. Easy to navigate and informative.
Davis Phinney Foundation for Parkinson’s From the website: We all want a cure for Parkinson’s. However, until that happens, we know that people are going to live a very long time with it; therefore, the most important work we can do is to help them live well TODAY. We do this by providing education, tools, resources, and inspiration that touch on every aspect of life: physical, emotional, intellectual, social, and financial. . . . Davis Phinney is an Olympic Bronze medalist . . . who has celebrated the most victories of any cyclist in American history..
International Parkinson’s and Movement Disorder Society Aimed primarily at physicians, but has a Resources section with patient information translated into over 100 languages.
Michael J Fox Foundation for Parkinsons Research The Michael J. Fox Foundation (MJFF) exists for one reason: to accelerate the next generation of Parkinson’s disease (PD) treatments. Parkinson’s 101 explains the disease and offers a link to free ”Parkinson’s 360 Guide for Navigating Parkinsons”. Also discusses causes, symptoms, medications and treatments.
Parkinson News Today digital platform intended to provide the Parkinson’s disease community with the most recent news and information on Parkinson’s. Provides information on Causes, Diagnosis, Treatment and Living with Parkinson’s. Private forums for patients and caregivers. Reports on research and advances in treatment. The focus of the Bionews platform is to empower patients living with rare disease including Parkinson’s.
Parkinson’s Voice Project helps people with Parkinson’s and related disorders REGAIN and RETAIN their speech and swallowing. The online and in person programs can improve volume, articulation, breath support for speech, vocal quality, intonation, and facial expression. Patients and families also report reduced drooling and improved swallowing. This research-based treatment combines education, individual and group speech therapy, and daily home practice.
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National Organization for Rare Disorders NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Great site. I recommend starting with the “Living with a Rare Disease” and choosing your topic from the menu on the left, for a better overview. Don’t miss the graphic at the bottom linking to resources in your state. Look for the link for “Patient assistance programs”. And note the “Patient Organization” link at the top of the page for groups for specific rare diseases.
Rheumatology.org The link takes you to the Diseases and Conditions page. Scroll down a bit to the Fact Sheets. You’ll find an alphabetized, comprehensive list of diseases, click on the one that applies to your diagnosis for information. Also in Spanish.
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Sleep Foundation At Sleep Foundation, combine sleep health education with comprehensive product testing and the latest in sleep research to put you on the path to good sleep. The content on this website is for informational purposes only. Sleep Foundation.org does not provide medical advice, diagnosis, or treatment options.Our goal is to create dependable resources to help you take charge of your health and get the sleep you need and deserve.
National Sleep Foundation National Sleep Foundation is an independent nonprofit, dedicated to improving health and well-being by advancing sleep health. We provide simple-to-understand resources that help people get enough of the healthy, restorative sleep they need.
Spina Bifida Association Spina Bifida is the most common permanently disabling birth defect that is associated with life. Approximately 166,000 individuals in the United States have Spina Bifida. It’s a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine.” We offer in-person and online education programs featuring medical experts, parents, and adults with Spina Bifida. Our National Resource Center provides referrals and resources, responding to inquires in Spanish and English Guidelines for the Care of People with Spina Bifida provide evidence-based guidance on caring for Spina Bifida.
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Bite Me Cancer – Founder Nikki Ferraro was diagnosed with Sporadic Medullary Thyroid Cancer at age 17. Nikki’s goals for Bite Me Cancer: (1) is to support teenagers battling all cancers by providing them with Teen Support Bags containing items specifically chosen for teenagers and (2) raising research funds and awareness for thyroid cancer.
Graves Disease and Thyroid Association leading source of help and hope for people with Graves’ disease and other thyroid related disorders. We provide education and support for patients, family members, caregivers, friends and healthcare professionals.
ThyCa (Thyroid Cancer Survivors Association ) Online support groups. Information on specific cancers to download.
Thyroid.org Patient education page of the American Thyroid Association. You will find a comprehensive list of information on thyroid diseases and disorders to download or print.
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Well Spouse Association Advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse or partner. Offers peer support and educate health care professionals and the general public about the special challenges and unique issues “well” spouses face every day.