This resource is provided so you can quickly find and 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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ALS Association Amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Also known as Lou Gerhig’s Disease. Mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The “Newly Diagnosed” button will lead you to resources found in your state where you will find support in several different areas, such as equipment and technology, information, links to groups and other resources to help patient and family free of charge.
Arthritis.com Practical straightforward information. Tools for talking with your doctor, include a symptom tracker and ‘questions to ask’ form. Articles on living with arthritis and explain different types of the disease. Also a newsletter sign up. Helpline team available 800-283-7800 to help answer your questions about arthritis and how to manage it. They can tell you about open enrollment for insurance, important changes to Medicare drug plans, treatment options, navigating medical systems and more. Disclosure: Provided by Pfizer.
Arthritis Foundation – Tag Line: Stay in the Know. Live in the Yes. Well organized site achieves that. Find a Doctor – type in zipcode for a list of specialists in your area. Section on managing arthritis pain. “Newly Diagnosed” button leads to helpful tips.
National Aphasia Association Aphasia is a communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Hosts regular Aphasia Café sessions, Zoom meetings for people with Aphasia, caregivers and care providers on specific topics. Information for those with aphasia, caregivers, research and find a camp/program. A database to search for aphasia centers, support groups, and speech pathologists specializing in aphasia programming. aphasia ID card, etc.
Autism and ACC People of all ages can use AAC if they have trouble with speech or language skills. Augmentative means to add to someone’s speech. Alternative means to be used instead of speech. Some people use AAC throughout their life. Others may use AAC only for a short time, like when they have surgery and can’t talk. Under the ACC and Autism tab is information on the importance of providing alternative communication and how to choose AAC device or app. Tips for using AAC are found under the What is LAMP tab, click on Resources
Autism Society Empowers individuals with Autism and their families to make informed decisions in the planning and delivery of individualized, evidence-based services and support. At the core of the Autism Society’s work is our goal to influence meaningful change in support of the Autism community. Find the support you need, when you need it by accessing our resources. The Autism Society’s National Helpline is a fantastic way to learn about resources and services in your area. Affiliate groups are located in each state. Click on the state name to find support near you.
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BMT InfoNet is a non-profit patient advocacy organization that provides high quality information and support services for a variety of rare diseases. From the website: “Our goal is to empower you with credible information and support to enable you to take a more active role in decisions affecting your health and treatment options. Whether you are just beginning your. . . journey, or learning to manage the joys and challenges of survivorship, . . . . Online information. . . Support groups and one-on-one peer support program. Directories of . . . providers. Video learning library . . . ..” The focus of the Bionews platform is to empower patients living with a rare disease. List of diseases is here
National Federation of the Blind We advance the lives of our members and all blind people in the United States. The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles. Support Community for specific types of blindness. Check out the Resources and Programs and Services tabs for information and help. Visit our legal support and resources page to learn how you can prevent and report discrimination, connect with legal resources in your area, and advocate for your legal rights. Free Slate and Stylus Program. Free White Cane.
Brain and Life Patient education from the American Academy of Neurology. I picked up this free magazine in a doctor’s office. It has been a valuable resource, as has their website. The website information includes Caregiving tips, including financial tips, Brain Science with information on disease management, Brain Disorders from A to Z, including Sleep Apnea (surprise!) and podcasts on a variety of related topics. Sign up for the free magazine and/or one of the free email newsletters on specific related topics. Highly recommend if this fits your situation.
Brain Injury Association of America BIAA’s mission is to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury. We are dedicated to increasing access to quality health care and raising awareness and understanding of brain injury. With a network of state affiliates, local chapters, and support groups, we are the voice of brain injury. Sections also dedicated to caregivers of those with brain injury, legal information and other resources related to brain injury.
Brain Trauma Foundation leads the way in conducting clinical and field research about traumatic brain injuries (TBI). Our work ranges from looking at the use of quantitative measures via eye-tracking goggles to ensure visual attention, to being part of a multi-institutional research consortium that seeks to provide a stronger evidence base for brain injury care.
Bright Focus Bright Focus has funded nearly $300 million in research grants to more than 6,000 researchers across 25 countries seeking cures for Alzheimer’s disease, macular degeneration, and glaucoma. Each disease has a section of the website dedicated to information, treatments and resources for those diagnosed.
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American Cancer Society 1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime. If you’ve been recently diagnosed, or know someone who has, here are answers, guidance, and support. Select the type of cancer from the “All about cancer” for specific information. Get financial help, information for caregivers, learn about treatments, how to cope palliative care and so much more. American Cancer Society Cancer information and support for cancer issues. Phone: (1-800-227-2345)
American Childhood Cancer From the website: “Most childhood cancers fall into one of several specific types, such as blood, brain, liver, kidney. Information is provided on each one. Childhood cancers tend to be more aggressive than adult cancers. Childhood cancers are rare, and only specially-trained doctors have the knowledge and experience to properly treat them. . . . . The Vision: ACCO is committed to empowering children with cancer and their families to make informed treatment decisions through informational support.” This compassionate website is well worth checking out if childhood cancer is a part of your life.
Cancer Dietitian translates evidence-based nutrition guidelines for those with cancer and those who are survivors into consumer-friendly messages for everyday life. The author’s passion is wellness for cancer prevention and survivorship, and she specializes in making healthy living fun!
Cancer and Careers Mission: Cancer and Careers empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools and educational events.
Cancer Care Find information on the many different types of cancers, places to seek financial help, articles on how to cope with cancer, and recorded workshop on coping with cancer, plus much more. Very thorough and helpful website. Need help organizing support for someone with cancer? MyCancerCircle.net is an online tool that organizes family members and friends who want to help.
Cancer Hope Network We care because we’ve been there. Our mission is to empower with personalized, one-on-one peer mentorship support from survivors and caregivers who have faced a similar experience. Check out the Resources tab for other organizations providing support and information. (My fave: “Stupid Cancer”!. . . make the lives of AYA cancer patients and survivors suck less so that they can Get Busy Living.)
Cancer Nation Formerly know as National Council for Cancer Survival. From the website: We are the 18 million Americans living with, through and beyond cancer. And we demand the right to thrive. Today, cancer is not just about how long we survive but how well we live. The very treatments that save us can alter our health care needs forever. Cancer can change our bodies. Destroy our savings. Mess with our minds. Or return when we least expect it. We need a cure for care. Explore our new look.. . .help us build a future where thriving after cancer is the norm, not the exception.
Cancer Support Community Provides support communities in 200 locations, plus online groups for those with cancer
Triage Cancer Extensive information about insurance and employment for cancer patients. Find resources on practical and legal issues most important to navigating a cancer diagnosis
The Leukemia & Lymphoma Society Dedicated to curing leukemia, lymphoma, myeloma, and other blood cancers. Home page has information for community support, contact information for treatment and clinical trials and financial support for those with blood cancer. The Dare to Dream project aims to improve the quality of life for every child with blood cancer.
Lymphoma Research Foundation Nation’s largest nonprofit dedicated exclusively to lymphoma. provides trusted information, expert-led educational resources, and community support to people affected by Hodgkin and non-Hodgkin lymphoma, including patients, caregivers, and clinicians. At the Lymphoma Research Foundation, everything we do begins with scientific research and insights from the world’s leading experts for each of the more than 100 subtypes of this disease. Lymphoma CarePlan is a resource and guide to help patients and their physicians discuss and document the cancer experience.
NO FOLLOW National Comprehensive Cancer Network NCCN Foundation is committed to advancing cancer care so all patients can live better lives. List of 60 different cancers with printable information booklets on each one. Available in multiple languages. The ones I checked out were quite detailed. Thorough information –excellent for reference.
Cerebral Palsy Guidance Cerebral palsy (CP) is a group of neurological conditions caused by brain damage, and it is the most common motor and movement disability of childhood. As an umbrella term, cerebral palsy refers to a group of symptoms and disabilities.[1] They are all related, but each child will have a unique and individual experience. Sections with overview of cerebral palsy, tips for living with cerebral palsy and financial aid.
National Association for Continence Website provides information on s bladder and urinary conditions, Find a Doctor lists, newsletter sign up, answers to questions as “do I have an UTI or a bladder infections” , printable patient resources such as symptom trackers and more.
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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.
National Down Syndrome empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. The organization’s work is achieved through three key areas of programming: Resources & Support, Advocacy & Policy, and Community Engagement.
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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!
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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.
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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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.
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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.
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.
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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.